Don't know where to go from here - Fertility Network UK

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Don't know where to go from here

60 Replies

I can't quite believe this is happening again, but I've been informed yesterday, at a private scan, that the pregnancy I've been so very worried about losing since I had a positive result some weeks ago has resulted in a missed miscarriage.

The signs have all been there, of course, but despite my concerns raised to the midwife, the doctor and then the local EPU, I've been ignored, dismissed and had to pay to find out what I feel like I already knew.

I am astonished - again - at how insensitive, uncaring and unkind people working in this field are. The fact that my first pregnancy ended in miscarriage made this pregnancy all the more precious, and all the more worrying. And yet there was no reassurance, there was no additional support, or even signposting to organisations that could help. The lady at the EPU I spoke to seemed bored as I told her that the brown blood that everyone (doctor, midwife) had told me was nothing seemed to be getting more frequent, and I was particularly worried because the m/c I had in January had been terribly mishandled by the hospital.

The midwife, also, seemed uninterested and dismissive when I told her about my concerns having miscarried in January. They all just trot out the same meaningless phrase; "many women miscarry and go on to have perfectly healthy pregnancies". And in the meantime, those of us who don't just have to go on living with the agony of loss in a world that doesn't recognise the profound impact infertility and miscarriage has on a person.

I'm numb at the moment. I work in an industry and for a company that doesn't take well to sickness. Last time I went back to work the very next day as if nothing had happened. I can't begin to face going back there tomorrow, but can't bring myself to share this most personal of losses with managers and colleagues.

I don't know which way to turn. I don't even know where to start.

I'm so sorry for the tone of this post. If nothing else comes of this, I want to find a way to communicate to the medical profession how terrible their approach to this issue is, and how deeply the pain of this loss goes for each individual. Stop generalising, and start treating us like we're real people.

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60 Replies
Lynnr54 profile image
Lynnr54

I’m so sorry for your loss. The way you have been treated is absolutely shocking and you have every right to be furious. They can trot out the same phrases all they like but we know our bodies. If I were you I would put in a formal complaint letter!

In terms of work, I would suggest asking your GP for a sick note - it has more impact than signing yourself off sick. You need to put yourself first and come to terms with your loss and get yourself in the right frame of mind before going back to work.

Look after yourself x

in reply to Lynnr54

Thanks so much for your reply. That's a great idea about the sick note. I'm not looking forward to calling them as they've been so unhelpful throughout, but this could at least help me out with the work situation. I'm also thinking about writing an open letter to my local NHS Trust, kind of like a witness impact statement. It won't change my situation, but if it falls into the right hands maybe they'll sit up and listen xx

Dreams1982 profile image
Dreams1982

I'm so sorry for your loss x I agree with the previous comment go an see your gp and get signed off. I totally understand what you mean about work my employers are the same and we put them before ourselves.

Could you contact PALS at your hospital with regards to the poor treatment you have received? Xx

Take care of yourself and take the time you need xx

in reply to Dreams1982

I hadn't thought about PALS, that's a really good idea, thank-you. And thanks for your lovely words too xxx

So sorry for your loss, which has been made worse by unsuportive health professionals.

With regards to work I would definatly say look after yourself first , like the others have said can you get signed off on sick to give yourself time.

Sending huge hugs xx

in reply to

Thanks so much for the advice. I'm worried about taking time off, but I've been thinking about leaving the job for some time, so perhaps this is the sign I needed. I love your dogs - cocker spaniels always make me smile :-) xxx

in reply to

It's sad that you feel pressure to go back. I'd definatly look after number 1 though 😊.

Awww thank you there hard work especially the youngest at 1 he likes to destroy everything when we are out including my husbands passport! They are called lunatic and chaos 🤣 xx

in reply to

Haha - great names! I've just been signed off for a week and will see how I feel next Monday. I think I just need time to be sad, and angry and not face the world for a little while xxxx

in reply to

I'm glad you got some time off, totally get the switching off from the world.

Look after yourself xx

in reply to

Thank-you. You too xx

I'm so sorry to read this, this situation is horrible enough without the dreadful treatment you've been faced with!! I'm fuming!!!

Definitely put in a complaint and get a sick note for work.

Look after yourself and make sure you do what is right for you over the next few days, this is sadly your journey and they need to understand that!

Thinking of you, huge hugs xxx

in reply to

Thanks so much for the reassurance and advice. I'm so angry and so drained. I really appreciate the advice from people on this forum, as my brain doesn't really know how to function right now xxx

E_05 profile image
E_05

I am so sorry for your loss, I agree the way we are treated as women who have genuine concerns is appalling. I would definitely contact PALS, I did after the way I was treated at EPU.

Please allow yourself time to grieve and process what your going through, get signed off if you need to. Putting yourself first is what’s important at the moment xx

in reply to E_05

Exactly - it's so belittling to have your concerns dismissed as some silly girl who's making a fuss about nothing. Even if there's no physical link between multiple miscarriages (which I'm sure there are, but the med profession just isn't prepared to spend the money on investigating), the emotional impact that you can't help but carry from failed pregnancy to the next is unbearable. How can docs, nurses and midwives be so dismissive of this in a generation that supposedly takes mental health so much more seriously?

Thank you so much for your reply, I know you have had a terrible experience yourself, so your words mean a lot xxx

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to

The royal society of obstetricians guidelines refer to some evidence that women who have good care in early pregnancy are less likely to miscarry but they don’t know why... might be worth looking this up and referring to it in your complaint if you feel it would help.

in reply to Lizzielizzielizzie

That's really helpful - thank-you so much. There's so much 'we don't know why' in all of this. So if they 'don't know why' my first and now second m/c happened, how can they possibly give me any reassurance with 'it probably won't happen again' without any investigation? Thank-you again for this, I'll definitely look into it and make reference to it in my complaint.

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to Lizzielizzielizzie

Was just looking for the link and found this information, there’s a quote about being offered a follow up appointment after an early miscarriage... never had this!

Anyway, it’s the NICE document about what should happen in cases of early miscarriage, you can check it to see exactly where your care fell short and this will make your complaint to PALS more powerful. If you have the energy 💜

nice.org.uk/guidance/cg154/...

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to Lizzielizzielizzie

Section 6.8 in this document is what I was referring to - evidence that attendance at an epau has a beneficial effect.

rcog.org.uk/globalassets/do...

in reply to Lizzielizzielizzie

Brilliant - thank-you so much xxx

E_05 profile image
E_05 in reply to

I’m totally with you, I was naturally more anxious like you due to a MMC last year and we found out about our MMC this through a private scan - the NHS even questioned why I went for a private scan as it wasn’t need - I could of punched them. I think there’s still such a taboo around ‘early loss’ even in the hospital, how do the expect society to have more understanding when so called professionals don’t.

I hope you get some proper support moving forward, you need to feel like you’ve got people around to who are taking you seriously. If you ever need to talk feel free to message, thinking of you xx

in reply to E_05

Who on earth are they to question your decision to have a private scan? Ridiculous! You SHOULD have punched them! And you're exactly right; if meds aren't taking our loss seriously, then how can we expect employers and the rest of society to do so?

I really appreciate your support - it really does make a world of difference. And please feel free to message me any time too xxxx

E_05 profile image
E_05 in reply to

I know they said the NHS offer sufficient scans - are they having a laugh! The other problem is there often treating people like this at their most vulnerable when they haven’t got the strength to argue or often then can’t remember what’s been said.

Thank you, this forum has given me such support through all my difficult times - it’s just a shame so many of us have to go through this xx

in reply to E_05

Unbelievable. Sufficient for what? For healthy, low-risk pregnancies? If only that applied to everyone, eh? And you're right; when you're vulnerable, scared, exhausted and confused how can you argue with the 'experts'?! xxx

E_05 profile image
E_05 in reply to

Exactly your so right. And the rubbish they come out with about plenty of women have had miscarriages and gone on to have healthy pregnancies is just another kick in the teeth. Argh makes me so angry xx

💔 so sorry for your loss.

That’s appalling how you have been treated. I would definitely contact PALS. Sounds like lots of lessons need to learnt by many healthcare professionals here.

You need to put yourself first and take time off work. Your GP can sign you off. Forget about your employer (easy for me to say), you need proper time to grieve and look after number 1 xxx

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to

My gp also asked me whether I wanted my sick note to say miscarriage or not... if you don’t want work to know then maybe yours will be willing to put something more generic.

in reply to Lizzielizzielizzie

That's great, I was really hoping they would be discreet. I don't want people at work to know - it's just not that kind of workplace (where is, I suppose?). Hopefully I can get the same discretion from my doctor xx

Tugsgirl profile image
Tugsgirl

I’m so so sorry. I know exactly how you felt about this pregnancy as I felt the same after my first loss and went on to lose the next one too. Two missed miscarriages. What are the odds! I voiced my concerns with my last pregnancy (not due to anything being or feeling wrong) but because I had miscarried once this year and I was terrified it would happen again and was made to feel like I was being a bit silly. They tell you to relax but how can you? I booked a private scan and found out the bad news too.

I’m just so sorry to read this. Here for you if you need me xx

in reply to Tugsgirl

That's exactly it - they work on the odds of you having another m/c. Odds are you won't have another one, so we won't offer you any extra care or allay your fears or anything. You're on your own. And being told to 'relax' and 'don't worry' is just ridiculous. I was worried, all the way through, and no amount of 'it's probably fine' was ever going to be enough to make that go away.

Thanks so much for your reply. I hope you're doing ok too after everything. Sending you much love and hope for the future xxx

Tugsgirl profile image
Tugsgirl in reply to

Thank you. As I’ve now had three miscarriages (the first was 9 years ago) we have now been referred to Tommy’s so I’m hoping we can get some answers before moving on with our next fet 🤞

I’m sending you much luck too and hoping that 2018 is a much better year for you xx

in reply to Tugsgirl

Well I hope you can get some answers through the Tommy's referral, and may 2018 be your year xxx

in reply to

With all due respect if you have medical problems that make miscarriage more likely then things like relax and dont worry are stupid and conditions aren't helped by those things. Would you tell someone with epilepsy to relax? No you wouldn't! Its no different to that that relaxing and not worrying with a pre existing condition is stupid advice!

in reply to

This is brilliant - so well put. It is utterly pointless isn't it? If I could relax, I would! Having a trained professional ignore my genuine concerns and tell me 'it's probably fine' doesn't/didn't help at all. There is obviously value in thinking positive and being relaxed as possible, but to dismiss genuine concerns with that kind of advice is ridiculous xxx

I would suggest getting touch with the miscarriage association or Tommy’s to get some support.

I’m sorry you’ve had such a rubbish time. I too had a bad time with my first miscarriage but a much better experience with the second one. I hope things get better for you hereonin.

in reply to Lizzielizzielizzie

I've had a look at the miscarriage association's website, but not Tommy's before. Both really good suggestions though, so thank-you. And I'm so sorry to hear you've been through all this too. It's just horrible that so many of us are affected by this. I don't know where i'd be without this forum xxx

Lizzielizzielizzie profile image
Lizzielizzielizzie in reply to

I think you can ring the miscarriage association to speak to someone too, but probably not on a Sunday.

Aleelilook profile image
Aleelilook

I’m so so sorry for your loss, it is just heartbreaking, and the way you’ve been treated by people who are supposed to care is just outrageous. I think all the ladies have made brilliant suggestions, but I just wanted to say you’re in my thoughts xxxxxx

in reply to Aleelilook

Thank you so much. This is such a supportive place, I would be completely lost if it wasn't for the kind words and advice from so many brilliant people xxx

Amanda86 profile image
Amanda86

I'm so sorry to read this, how awful for you.

I'm very annoyed at the midwife saying to you many people miscarry and go on to have health pregnancies, yes they maybe do but stop treating people like they are everyone else! Your an individual who has been through so much more, what happens to other people doesn't put your mind at ease!! They really can be so clueless and insensitive!!

As for your work, I would take the time off. Your GP can write anything on your sickline and your manager and colleagues don't need to know the reason you are off if you don't want them to know. At the moment your the most important, your health comes before work and don't let them make you feel it should be any other way. Do what is best for you.

Again, I'm so very sorry for what your going through. Thinking of you 😘Xxx

in reply to Amanda86

I couldn't agree with you more; telling me how many other people go on to have healthy pregnancies/babies doesn't lessen my pain, it increases it! And not to mention the fact that it completely disregards the experiences of so many women who don't. It's a case of not treating the individual, but referring to guidelines and general statistics.

Thanks so much for the advice. I really do feel like I need to look after myself after all of this and the support of so many people here has really helped me see that xxx

AllWeNeedIsluv profile image
AllWeNeedIsluv

I'm so so sorry hun. I know how you feel the way we get treated is dispicable. It really is shocking that a caring industry are somewhat the complete opposite of what their supposed to be.

I'm so sorry for your losses I know what your going through I'm currently experiencing one myself iv had a few and I'm sick to the stomach of them

We should get looked after properly and our concerns looked at thoroughly when we're worrying and no something isn't right.

I'm sick of hearing brown blood is old blood also. 3 of my losses have been brown blood spotting discharge it's only when it's been confirmed I'm loosing that a couple days later it gets heavier a redder.

I think you really need to complain to these ppl and their superiors. Maybe even write a letter to your mp. It's diabolical how you've been treated and I know your not the only person it happen's way to much and needs to stop.

You need tlc and care not to ho out your pay to find out what your heart was telling you. Shame on them.

Get gp to sign you off like the others have said.

I'm sending you big hugs hun and only wish you wasn't going through this it's tough without the added pressure and stress you've been under. Lots of love and hugs 💗💗🤗😘😘

in reply to AllWeNeedIsluv

I'm so sorry to hear of your experiences. It's shameful, isn't it? I hear what you're saying about lobbying to an MP or something. It's crossed my mind lot over the past year with the dismissive, careless approach I've been treated with. It's just not good enough. Miscarriage is so serious, and can leave a devastating impact, in many cases women have been diagnosed with PTSD. And the isolation of infertility goes completely unrecognised too.

The fact that so many people on this forum have reported poor treatment goes to show that it's being mishandled all over the country, so the guidelines and attitudes need to change. Miscarriage and infertility is enough to deal with; uncaring medical staff who don't take the time to listen to their patients' well-founded concerns is a step too far and it has to stop.

Sending you love and huge thanks for your lovely words of support.

xxxxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to

It is shameless.

And, ptsd I can understand I know for a fact my next pregnancy I'm going to be so worried it's crazy after all my losses this pregnancy my anxiety was of the scale. I knew it wouldn't end well.

I think I'll write to my mp after iv got over this one. Womens problems are never recognized enough we ho throygh so much rubbish. Miscarriage is devastating. I can honestly say if it wasn't for heakthunlocked this year I'd of been hairless

I hope you get some relief soon and can start to grieve instead if be wound up by these arses. Excuse my language. My pain meds are kicking in so I'm not thinking straight but I will get in touch soon and see how your getting on. Lots of love 💗🤗😘

in reply to AllWeNeedIsluv

I'm totally fine with the language. I could think of much worse words to use :-)

I can't help that feel that because this is seen as a female problem, it's not prioritised. When you consider the number of men in government, running hospitals, writing clinical guidelines, running the NHS etc, a large part of me feels like they will never truly give this issue the weight that it deserves.

I'm sending loads of love to you for your next pregnancy and I truly hope you get the support that's so very much deserved xxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to

It's true the system is, definitely dominated by men who don't give a 💩about us. It's sickening.

Thank you for your kindness. I hope you have some faith and reassurance in your next pregnancy and get the proper care we all deserve sending you lots of love and big hugs. I'm here if you ever want to talk ever 💗💗🤗😘

in reply to AllWeNeedIsluv

Thanks so much, and I do hope that at some point in the future there is a change to the way this is dealt with and the way pregnancy loss is treated. It shouldn't be this way. Lots of love to you xxx

Cinderella5 profile image
Cinderella5

In so sorry for your loss and your dreadful treatment by the medical staff!! Absolutely shocking. Take care of yourselves. Thinking of you xx

in reply to Cinderella5

Thank-you so much for your kind words xxx

tish44 profile image
tish44

My heart goes out to you , put yourself first & most definitely get signed off by your GP.

PALS should give you advice & support about how to address the lack of care you've received. 😘 xxx

in reply to tish44

Thank-you, it definitely sounds like PALS is the way to go xx

Leesara profile image
Leesara

So sorry to hear of your loss. You will remain in my Thoughts x

Penders profile image
Penders

I'm really sorry for your loss. I would get yourself signed off and take time to process everything. I had a missed miscarriage a few weeks ago and didn't take any time off work, not a good idea as still not processed everything. Sending you lots of love and hugs xxxxx

in reply to Penders

Oh you poor thing. That must have been so awful. I hope you've got through it physically and give yourself some time to come to terms with it emotionally. It's a long road, sadly. I've been signed off until Monday which is a huge relief. The doctor said she can do longer if i feel like I need it. Take care of yourself and make sure you get lots of support outside of work xxx

in reply to Penders

Hi, I hope you're doing ok and have given yourself a bit of time to process everything. I've been signed off for a week, which initially I thought was too long, but now I realise I may need more as I'm very up and down, not to mention the ongoing physical symptoms. Sending you loads of love xxx

Penders profile image
Penders in reply to

Hi I'm glad you got signed off, if you need more time I would certainly take the time that you need. I haven't really given myself much time, its been a busy few days. My emotions are still all over the place, one day I'm fine the next I'm angry and upset at everyone. I work with my husbands family and its a really small team so I feel guilty about taking time off. I am off over Christmas but wont get much time to myself as my 9 year old will be off too. I've found her crying about it all, which breaks my heart even more. Sending you lots of love and big hugs xxxxx

AllWeNeedIsluv profile image
AllWeNeedIsluv in reply to

Glad to see you've been signed off hun. This whole process is awful. Thinking about work is the last thing you need. I'm still not feeling right physically and had medical management on Friday . I hope you can manage to rest and start processing this horrid situation. Thinking of you 💗🤗😘

Jaky76 profile image
Jaky76

Sending loads of love and big hugs xxx

Gillyc1 profile image
Gillyc1

I’m so sorry to read this, they definitely need to stop ladies who have miscarried as just a Number. Yeah , many ladies have miscarriages and it is truly heartbreaking but the fact that certain couples go through the ivf route, find out they are pregnant then cruelly have it taken away after everything they have been through is torture. Some of the staff need retraining and to realise is that all we need is to be listened too and understood xxxx

in reply to Gillyc1

Absolutely right - it's about being treated as an individual, not as a statistic or having our experiences generalised as being 'just one of those things'. Hear our pain, don't just ignore it! xx

Gillyc1 profile image
Gillyc1 in reply to

Perfectly said xx

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