To think I might know more than my medical team?

[Fluffybuns88]

I'm currently 30 weeks pregnant after 8 losses and years of secondary infertility. I have some complex medical issues such as an unspecified auto immune disorder.

From the very start of this pregnancy I've had to fight to get listened to by medical professionals, had to ask several times for asprin and progesterone which was recommended by a consultant years ago, the hospital have lost all of my medical history, the midwife reffered me to the mental health team behind my back at booking and told me 6 of my losses didn't count due to them being before 8 weeks.

I've spent months trying to see a consultant because they are pushing hard for a vbac but refuse to tell me why this would be the best option for me as an individual and kept getting told they could refer me tonthe mental health team because there's no record of my medical diagnosises.

I have insulin driven PCOS and had to advocate for a second GD test as they originally tested at 16 weeks, started metformin for borderline sugars (nothing crazy) upped them after 4 days, tried to put me one insulin 2 days later, not enough time for it to work and weren't following guidelines because they thought I'd been on it longer (metformin is now controlling sugars).

Fast forward to a couple of weeks ago they offered heparin and I had what I believe is an immune reaction, flared my inflammatory conditions, significant bruising, bleeding gums, petechiae all over and I felt like I'd been hit by a train. I also has reduced fetal movement and accelerated fetal heart rate, I stopped them against advice until I'd spoken to someone more knowledgeable, this was the right decision according to the relayed message from the consultant who can't see me for 2 weeks so any tests they do will likely show normal.

At no point has anyone taken me seriously when I've told them that it might be worth considering my individual health conditions before railroading me into standard treatment which I've accepted everytime, each visit I'm being fobbed off that I'm mentally unwell (I'm not, but I do have several physical conditions) luckily I've seen a member of the medical team that has removed the mental health flag off my notes as she believed it was impacting my care.)

I'm super frustrated and just want someone in my team to listen to my concerns properly and make decisions based on me as an individual and not a guideline.

AIBU?

As a pregnant woman, you will never receive healthcare like you are your own person with agency. Everyone thinks you will be incapable of making a sensible decision and that anything you choose to do is harmful to the baby. I wanted ondansetron for morning sickness and was told I couldn't have it as it was bad the developing foetus. I'm a doctor and can make my own fucking decisions.

If you're a doctor and ignored, I've got no freaking hope 🤣

Do try though. Really advocate for yourself. I was not in a good place during pregnancy (at least whilst I was feeling so nauseous) and so didn't question things at the time. I bitterly regret that and wish I had put in a formal complaint when I had the chance.

I’m so sorry OP. While the midwives may not know much about autoimmune condition, they should be referring you to someone who does (aka an obstetrician) and escalating any concerns appropriately. I am so sorry you’ve been told your losses ‘don’t matter’ - they absolutely do, that’s so unnecessarily cruel.

Can you ask to speak to the head of midwifery or a consultant midwife, you have every right to complain but also ask for continuity of care given the mess you’ve been subject to.

Sorry OP IME antenatal teams are awful with anything outside standard medical issues. A relative is on cortisol for life and post c section the midwives wouldn't medicate her. In the end she got her husband to bring her tablets in and took them without telling the midwives. She'd have died otherwise.

Advocate for yourself if you can. I know it's horrible feeling like you're disagreeing with someone who is "supposed" to know more but often they don't.

I'm sorry for your losses and congrats on your current pregnancy.

Do you have records/consultant notes etc regarding your auto immune issues that you could show them? If you don't, then wouldn't your GP have been sent them? You could ask for copies.

I don't have an extensive medical history, but when seeing anyone medical, always took in my list. This included medical history, any diagnoses illnesses, current meds etc. I agree that I found midwives only had some knowledge about other medical conditions. Same as a registered nurse will only have some knowledge about the birthing process- because they are different specialisms with only a certain amount of overlap. Wishing you all the best x

This. I have had some lovely professionals in my pregnancy who treated me like an adult with capacity and probably an equal number who just clearly couldn't imagine that to be the case. For all the talk about evidence based medicine and informed consent I've also been told some wildly inaccurate things that the briefest look at the NICE guidelines or the trust's own policy would have set straight.

I was told pretty much the same thing.

Horrendous nausea started the day before my period was due, and just got worse. I couldn't keep water down, eating was a nightmare, I went from in between a size 12 and 14 to very comfortably being a size 10, my rings were falling off my fingers. GP said nothing could be done unless I needed to be hospitalised, implied anti nausea drugs world be bad for the baby and told me to try harder to drink. Midwives just seemed confused and weren't helpful either.

Yes I can relate this. Impossible to actually be listened to and treated with respect.

If you have an adverse drug reaction to heparin on your notes they may be reluctant to consider c section as usually heparin is prescribed afterwards for a couple of weeks.

You’re not being unreasonable at all. If you don’t advocate for yourself no one else will.

I recently had an emergency c section and experienced blatant medical misogyny- there were so many examples. It included being completely ignored when I told them I was in excruciating pain and something was wrong after the op. Was told it was just ‘gas’ and I needed to ‘walk it off’ (less than 24 hours after major abdominal surgery). In reality my bladder was in retention and spasming. It was only when my husband who is a doctor turned up in the morning and he told them they needed to reinsert a catheter immediately that they listened. No apology for ignoring what I’d been saying.

So often women’s genuine symptoms and pain are just passed off as hysteria.

And as for the anti sickness drugs in pregnancy- I had severe morning sickness but was told the same about ondansetron and basically just told to put up with it. It was only when I ended up in hospital with severe dehydration that I was prescribed Xonvea- this is designed specifically for morning sickness with no side effects for baby but they don’t like prescribing it because it’s expensive. This was never mentioned to me as an option before- it would have been much cheaper for my GP to just prescribe it to me rather than deteriorating to the point where they had to admit me to hospital.

That is terrifying - I hope she complained. Her birth plan should have included a medical plan for hydrocortisone injections written by her endocrine team.

This is another sore point, I can't get anyone to speak to me about weighing up the pros and cons, I had a horrific birth with my first, left 51 hours with prom, induction, failed venous and forceps and an emcs where I could feel pain. It was all so botched that it left me disabled (likely triggered the auto immune issues to become a problem) I now struggle with post exertional malaise, fainting spells which aren't ideal during labour and nerve damage. I don't want another induction and they want me to deliver before 40 weeks because of the GDM.
I'm happy to risk the heparin if it's only a mild reaction post partum but worried that a strong immune response would be dangerous whilst pregnant. It's a nightmare!

I can relate to this. My GP kept prescribing different anti sickness but seemed completely unconcerned that I could barely drink anything - I drank absolutely no water from 8 weeks to 14 weeks. Midwives at my 12 weeks appointment were clueless about the sickness/ dehydration and seemingly had no experience of caring for a woman pregnant after loss and IVF and was is and is not appropriate to say.

@Fluffybuns88 I made a complaint via Maternity Voices Partnership about poor midwife care and this was fast tracked to the matron. It looks like there is a branch of MVP for every area, look on their website.

I got told my symptoms were anxiety and literally dismissed by doctors and midwives as being hysterical. Turns out I was severely anaemic and had to have a blood transfusion when I had my C-section and on iron tablets for months. All of my symptoms it turns out were for severe anaemia, pregnant women are fobbed off so much. YANBU OP.

Huge sympathy from me @Fluffybuns88. My DH has a rare autoimmune condition that was only diagnosed a few years ago. It still doesn’t explain everything about what’s wrong with him but at least it’s a starting point and gives some validity to what he says. Most doctors are absolutely confused by his medical issues. They’ll reel off a list of tests that he should get done. He’s already done them. Normal results. Cue them being even more confused.

Do you have an immunologist? Have you been referred to one within the NHS or can you afford a private one?

A General Physician is another specialist that can be very useful to have. I’m not in the UK so I don’t know if there’s an equivalent there. There should be with our whole country being based on the UK. Kind of like a GP but on steroids and supersized with the clout, influence and ego of a specialist. DH’s General Physician is the central coordination point for all of his other specialists and will happily boss around other specialists if needed. He keeps an overview on DH’s health and sends him off to other specialist doctors as needed. Here’s a link to explain it:
https://imsanz.org.au/Web/Web/About-Us/What-is-a-General-Physician.aspx

If I didn’t live with and see first hand what can happen with DH’s health I’d be wondering if he was a bit crazy. One doctor wanted to refer him for psychological help.

You need to keep advocating for yourself and the safe delivery of your baby. Can someone attend with you? Eg DH/DP, sibling, parent, best friend? It will help if you have someone who can back you up and who can observe and keep track of the conversation between you and the midwife/doctor.

Can you make a complaint or enquiry via PALS?

@Fluffybuns88 Were you under a consultant for the auto immune problems?
If so could they help?

No immunologist, I've been bounced all over the place with consultants, all of them have agreed something's not right and diagnosed me with something separate so have about 10 different diagnosises. Unfortunately they've all done tests related to their specialism, found something no ones connected the dots so to speak.
My immune markers are significantly raised for Lupus but each time I've gone back it's been someone else who's bounced me back to the GP, in the end me and my GP have just been managing symptoms and trying to build a picture.

Heparin reaction sounds horrible, it knocked out your platelets, really dangerous - don't let them fob you off about that.

This is what I thought, issue is they haven't tested my platelets yet and I'm not seeing Haem until weds when my platelets are likely to have stabilised.

Were you monitoring your baby’s heart rate at home? Otherwise I’m just wondering what the medical team said when they noted reduced movement and increased heart rate?

Unfortunately they've all done tests related to their specialism, found something no ones connected the dots so to speak.

I can't get anyone to speak to me about weighing up the pros and cons,

That connect-the-dots person should be your GP. They are the ones who are supposed to take a holistic view, the generalists. Book a double apointment when you book to see GP. The GP doesn't have to be expert in each specialism to deploy their medical knowledge to help OP understand pros and cons. This.Is.The.Role.GPs.are.Supposed.To.Do. They are supposed to coordinate care and help patients with decsion-making.

Specialists are just that, they know their specialism and they know guidelines, indeed they are performance- assessed by following guidelines. On the whole, this is meant to make doctors accountable. Doctors can be penalised for not following guidelines. Blame the system that makes Docs hyper-specialise, not the individuals.

Esp. Complicated situation when OP has a mystery auto-immune disorder, there are no guidelines for it.

If I understand rightly, OP has to manage
PCOS
unspecified post-partum disability

and is also struggling with poorly understood
unknown something autoimmune
nerve damage
fainting spells

Not sure that is full list. And meantime MW is worried OP isn't coping, hence referral to MH services.

The HPs will keep screwing up until something they try helps with the poorly understood conditions.

It was picked up at a midwife appointment and asked to go in for a CTG heart rate was overall fine but not spiking with activity as it should, CTG took 2 hours to clear and they sent me on my way, the midwife did write an email to the obstetrics about the Heparin but couldn't advise.

My GP is really supportive and has spent 14 years referring me to specialists and supporting, the problem is less them and more the guidelines, there are tests that my GP just doesn't have access to and referrals now get refused because I have diagnosises.

My ANA is 1:400
dsDNA is 449
But the tests needed to move forward largely rely on being in an active flare when taken which my GP can't order. It's one of the reasons autoimmune disorders are so hard to pin down and often don't get diagnosed until there's serious complications.