Struggling with past medical trauma/negligence in late pregnancy - can anyone relate?

[OneSillyBee]

The shortest version of this post is that I am traumatised from medical negligence some years ago, which is now proving so hard to deal with in my late pregnancy (almost 35 weeks). I find myself terrified there's something wrong, and can't trust the midwives or doctors to correctly pick it up, or worse yet to just not believe me because I'm presenting as "anxious". I wondered if anyone could relate just for commiseration/empathy, or offer up what worked for them to deal with it?

The longer version is that last night at 2am I was so distressed with how much my baby was moving - she was thrashing around, it was painful for me when she hit the walls of my uterus or my nearby organs. It went on for about half an hour (such a long time when you're freaked out) and I think anyone with access to Google will know about the horror stories around "frantic movement" and stillbirth. I called my triage (not for the first time, and for this same issue) and the midwife told me to go to sleep.

I felt so fobbed off and humiliated, it's so triggering for me to not be listened to when I say I feel something is wrong. This is exactly what my trauma is rooted in - when I was 18 I went through thorough diagnostic tests (MRI etc) and a consultation for extreme pain and was told the tests showed nothing amiss, and was - obviously - told it was probably stress and anxiety. It took most of a full year, and more of the exact same tests and reappraisal of the first tests to find out there was a serious issue, which was indicated on the original tests. There was a whole NHS investigation into it and the hospital/consultant found at fault. I needed brain surgery it turned out. As a result of this experience I find it very very hard to trust medics - and it gets much much worse when I feel like I'm being viewed as anxious and irrational. It also doesn't help that I had some similar experiences of not being listened to when I thought there was something wrong in my last pregnancy, which I lost at 8 weeks last year.

To wrap up - I'm finding it so hard to stay above water in the last weeks of my pregnancy and the need to monitor movements at this stage is causing a kind of traumatic relapse. It's like the whole responsibility for my baby's life is on me to monitor and I have this awful fear of being ignored when I say I'm concerned. Has anyone else dealt with this kind of medical trauma through pregnancy? I do have a very good psychotherapist I see privately, and I've had pretty good (some blips) support from my midwives but before anyone suggests I talk to my MW/GP about how I'm feeling please remember these are the people I have the toughest time trusting!

I totally appreciate you will find it difficult to trust GP/MW, but being totally honest they are exactly the people you need to be telling about these things, they are the only people who can help you at the moment with any physical symptoms.

I’d absolutely recommend calling your midwife regarding movements and if you are worried and feel fobbed off just go down to the assessment unit and wait to be seen there in person. I’m nearly 3 months postpartum now and especially in the last weeks of my pregnancy I was always told to just come in whenever I felt movements differed from her usual pattern and each time they monitored baby to ensure all as okay. They always said they’d rather have me there twice a day every day and everything be fine than me wait a day not sure and something be wrong. Please please reach out to assessment unit/midwife x

I have no past medical negligence experience but I felt exactly the same during my pregnancy. I didn't trust the doctors or the midwives at all. I had a complicated pregnancy and multiple episodes of both reduced movement and the frantic movement you describe. I was a complete mess and developed what I can only describe as some form of OCD where I felt compelled to read pages and pages of medical research journals and studies and essentially trying to become my own medical expert despite having absolutely zero relevant training! I don't really have any advice I'm sorry to say, other than to say you are not alone. And when the baby arrived and the hormones changed/shifted I found it a lot lot easier.
I really relate to your statement that you feel entirely responsible. That's exactly how I felt. It is a lot of pressure to put on yourself

@Mrsttcno1 I was really quite surprised the midwife last night didn't take my call seriously at all, it makes me feel like there's a note on their wall saying "ignore this woman" with my name on. All the bloody advice is to call if you're worried and how much better it is to be safe than sorry and trust your instincts. My husband was on his way home from a long work trip and he came in at half past 2 to find me fully dressed (wanting to go to hospital) and crying my eyes out. I have a MW appointment tomorrow morning and today baby's movements feel back to normal so I think I can wait til tomorrow - it's not easy to get in touch with them and I can't easily get to the labour ward which is frustrating and adds to my paranoia/fear when it kicks in. Thanks for the reply 💕

@huitlacoche did it really get better when the baby came?? I so don't want to be a hypochondriac mother always thinking there's something wrong with my baby. I'll never get any sleep. Interesting you had the frantic movement too. Sometimes she just thrashes around like absolute crazy, and last night was the worst it's been. It's not that frequent, if it happened every day I could probably just get used to it. I also hate it when she has hiccups...

Yes I read all those papers and journals too, I'm becoming a real expert in something even if it's just I'm overthinking and scaring myself to death. I've done it multiple times in this pregnancy, it does border on OCD (which actually is something I struggled with a lot immediately post brain surgery).

for me it did get better almost immediately yes... I think because the baby was there, visible and tangible and my partner and others could also see and assess the babys health... I don't know it just took away that 'solely responsible' feeling I had so badly when pregnant. I'm still definitely not laid back or calm about stuff but I no longer feel the obsessive and all consuming terror and over thinking!
I really don't know what the frantic movement stuff was all about. I went in for monitoring so many times I can't even tell you. I think the hardest part, especially for an obsessive over thinker, is that a lot of the time there is simply no explanation for why the baby is doing what it's doing in the womb. I still don't know why my baby's movements were so random and changeable. I just couldn't accept that as an answer at the time!!
I do agree with the other poster that you should go in for monitoring whenever you feel you need to. And ask for extra scans if you still aren't happy

Sorry I'm the same poster that replied earlier - name change :)

Haha that threw me for a min! I think tomorrow I might tell my MW I need to be seen more often now I'm in the last weeks, even going up to fortnightly I don't think will be enough to help me stop calling triage in the middle of the night. The info out there on movement is SO bad, it's so inconsistent and most of it just fills me with new things to be terrified of. Well meaning awareness campaigns which don't align to NHS advice are a nightmare, and the frantic movement thing is the prime example. It's like the NHS line is just to say all movement is good. One midwife literally laughed at me when I described it, she obviously hasn't read what I've managed to find in 5 seconds of looking

Do you not have a pregnancy assessment unit nearby? So you don’t have to go to the labour ward to be monitored (I think most hospitals now as standard have a separate assessment unit to avoid any trauma/upset). If you are at all worried then definitely reach out and go to be monitored, it’s always best safe than sorry! And I’m sorry you’re having a bad experience, maybe I was just very lucky in that all of my midwives were really attentive and nothing was ever a bother! Do you have other hospitals nearby? It may be worth having a think because it’s so important to feel calm and confident when you go to give birth, if you don’t feel that way under your current care then it is not too late to transfer care so somewhere you feel more comfortable! X

So I'm around 2 weeks behind you but have experienced medical negligence and also see a private psychotherapist. I would thoroughly recommend that you try and contact someone today and ask for an urgent referral to the peri-natal mental health midwives. I'm at a different hospital to where the negligence happened but the peri natal mental health midwife has put a plan/notes on my file documenting that I will be/will present as anxious and that I have prior experience of medical negligence and the importance of feeling listened too as a result. Of course I don't know what the midwives/consultants would have been like had I not had the PNMH team on board but so far everyone has been happy to take some time to listen to my concerns and explain why something is(or isn't) happening. Good luck!

This sounds like exactly what I need, I do have an appointment with a consultant midwife tomorrow (additional to normal check up) at the hospital where my c section will be, they offer birth choices appointments so I can raise some concerns there - might see what she thinks tomorrow but I do hear you on the perinatal MH team. I'm just so reluctant to enter into that NHS web, I'm so suspicious of it. I am completely averse to even having the word "anxious" used about me, because it took a lot of counselling to reclassify what I was calling "health anxiety" to what it is, which is trauma. Someone calls me anxious and I immediately feel like they are calling me hysterical/hypochondriac!

I really don't know, there seem to be different options depending on the time of day but the times I have gone to labour triage it has been the only option as it was out of hours... There probably is a day assessment unit at my hospital, but it's just as far / as much hassle to get to. I do like my hospital and I have a good consultant, who has booked me in for elective c section at 39+4. Last night before I phoned my hospital I called the one that is nearer to me (where we live the nearest hospital geographically is not in our trust as it's over the border - I could have chosen to go there anyway right at the beginning but it felt messy to have one trust for my community midwife and another for my consultant care) but they said it would be better for me to go to the hospital I'm registered with. What would I do if I was on holiday somewhere?! Don't know why they couldn't just see me in a potential emergency.