To be seriously irritated

[Ironytheoppositeofwrinkly]

So I have been seething and stewing over this for a week or two, and have received directly opposing views from the two people I have confided in about whether I was overreacting in this situation.
I have had, to date, 5 miscarriages and a stillbirth over the span of the last 4 years. Previously, I was under a fetal medicine consultant, and he did all relevant tests, and diagnosed me with APS, a clotting disorder. After my last miscarriage, during which I didn't receive the blood thinners I needed ( a whole other thread in itself) I was finally referred to my local RMC and am now under a consultant gynaecologist/obstetrician. He has decided, for reasons only known to himself, that he doesn't want to accept my current diagnosis, and wants to start all testing again from scratch. When I asked him 2 weeks ago what medication or care would be offered if I fell pregnant in the meantime, I was told that nothing would be offered, bar an early reassurance scan. I immediately flew off the handle, and told him that if I lost another baby due to his reluctance to do his bloody job, then I would pursue a complaint to the highest possible level, as I feel this attitude to my babies dying time and time again is absolutely unacceptable. Was I being unreasonable, and does anyone have any advice to offer? Sorry it's so long.

Did he advise to wait until all his tests were carried out before TTC again?

Yes, he did, but he also doesn't want me on contraception during the testing either. Me and OH don't enjoy sex at all with condoms, and I more often than not develop thrush after we've used them, so not really an appealing option.

My source of irritation, was more that he had all the results in front of him from my diagnosis which was less than a year old.

YANBU OP. I would have hoped he could give you the relevant medication based on your current diagnosis if you fall pregnant, and if his tests then give reason to doubt that diagnosis, revisit the plan.

I'm sorry for all your losses. Fertility issues are a fucking bitch xx

Thanks englishrain. I would like to add, that I have never complained about any medical staff before, even when unhappy with care I've received. I have the utmost respect for all staff in the NHS, however I feel this particular doctor is taking the absolute piss. This isn't some mild condition, these are my babies that are dying. 4 of my losses have been twin pregnancies, so I've lost 10 little lives in total. It just seems so unfair.

Your gynae wants to thoroughly investigate your problem, and doesn't want to decide on a treatment plan until this has happened. That's a sound approach. If you choose to get pregnant in the meantime, then the risk of miscarriage is entirely on you. Or you can look into other condoms to find contraception that better suits you.

I appreciate that waiting is very frustrating, but if you're reliant on the NHS for treatment, then you need to wait until they are able to investigate the problem.

It's not at all unusual for a consultant to want to order fresh tests, in fact it's good practice to do so.

I am sorry you have had to suffer losses.
Sounds to me though that the consultant obviously is thinking something else might help and has said he wants to investigate further.

To avoid any further high risk pregnancies ...it's best that you enjoy sex less with condoms.

Best if luck for the future!

My problem has already been thoroughly investigated, I've had scans, womb biopsies, a laparoscopy, more blood tests than I can count. My partner has had sperm analysis, we've both had karotyping done. The only thing that came back abnormal was that I have a clotting disorder. 4 separate blood tests, 12 weeks apart have confirmed this. I understand that he wants to be thorough, however even once I'd had my diagnosis, I've still been denied the meds I needed, and now it looks like I'll just have to go through more of the same. I'm so tired of losing my children time and time again, it's not fair.

I think the consultant sounds good ordering fresh tests. He may well find something else. I know it can be a long wait on the NHS but it's that or private treatment.

Surely you wouldn't risk another miscarriage for the sake of worse sex? It wouldn't be his fault in any way if you knowingly got pregnant against medical advice, it would be on you.

It must be an awful situation to be in though.

I have nothing useful to say about the testing, but wanted to say re the condoms and thrush thing- this always happened to me, too, until I tried some that were latex free.

I am so sorry for all the loss you have suffered and the way this doctor has made you feel .

I understand that, but when I asked him what tests I could have that I haven't already had, he said there is no new tests, he'd just like to repeat them all. I just wish I'd never been referred, if there's no new tests I can have, I don't see how there's going to be new results within a year?

unmarkedbythat I already use latex free as I have a pretty severe latex allergy. It's been going on 6 months we've now not been able to have sex for, but that's obviously another subject.

I’m so sorry OP. This must be incredibly frustrating. Presumably you feel these further tests the doctor wants to do are going to uncover the same problem & you’re just wasting time & potentially lose another baby that could be saved. I completely understand you’re frustration.

I presume he has his reasons for this, & maybe if he prescribed the medication & it turned out to be pointless he could be penalised for not investigating thoroughly enough. I’m not at all medical, I’m just guessing here.

In my limited experience of dealing with the NHS & infertility they were not very compassionate at all & certainly not quick. As hard as it is, I think you have to avoid getting pregnant until these further tests have been done. Have they given you a time frame?

I’m very sorry, I’m sure you will have your much longed for baby soon & it will be very special indeed.

AIBU probably isn't the best place for this. I've had fertility issues and had the dildo wand of doom so many times it's unreal. Having experienced the length of the journey to get a diagnosis I can only imagine how it feels being sent back to the beginning again.

Could you go private? Sounds like conceiving isn't the issue, and if the medication for your current diagnosis isn't hugely expensive maybe a private clinic would be willing to prescribe it based on current results? I think private clinics do accept NHS results. I think I have a progesterone issue and the NHS have never bought it. I may well go private in the future if we decide to try for another.

I am so sorry, OP. It's unbearable to lose your children (I have lost two), and completely reasonable to be upset, angry and to tell your new Dr you will pursue a complaint if things go wrong because of his inaction. That being said, as frustrating, and possibly pointless, as having all these tests done again may be, I think the new Dr is just trying to be thorough. Perhaps he had concerns about the accuracy of the tests you've already done?

It may be helpful to ask why these tests need re-doing. Is it because the Dr has concerns, or there is something else that can be tested for now, that wasn't tested at the time; or is it just a tick box, 'because that's what we always do' exercise? If it's the latter, I'd be inclined to skip them and ask for whatever medication the results of the first set of tests indicate you need. If this Dr refuses to provide them, see if you can be referred elsewhere (I know this can be tricky, and going private may not be an option) and, if you can't, start a complaints process.

I am sorry I don't have any more specific advice that could help. If you can get someone else (preferably in the medical community, like your GP or midwife) to be your advocate, that does help immensely. My situation was different to yours, but I chose to pay for a private midwife, for example, purely because I needed an advocate for me if things went wrong (based on past history). She was worth her weight in gold for this reason alone, and she did it without pissing off the rest of the medical team.

I hope you get some answers and the care you need soon. Xxx

Do you know what, it's not the waiting. If I was having new tests, I'd wait as long as it took to get answers. The time frame, especially during the pandemic, has been fantastic to be honest. It's more the fact that I have had all these tests, some of which are extremely invasive and painful, not to mention risky, less than a year ago. I'm just frustrated because I'm going through these painful, invasive procedures, for seemingly no reason, as none of my results were even borderline or open to interpretation, they were completely and utterly normal

usernamechat you have hit the nail on the head, it's a box ticking exercise, because he doesn't accept the results of another doctor. This is what is making me so goddamn angry. As I said above, if there was a new test, or something that I haven't already had ruled out, I'd fall over myself to get it done, but that's not the case.

Oh gosh. I have APS, was diagnosed after 3 mc and a stillbirth. I'm sorry for your losses

Your doctor doesn't seem to know much about this disorder. Where do you live? I'm very lucky as am in london and the team at Guy's & St Thomas' are excellent in this arena. Professor Cathy Nelson-Piercy is an expert, could you contact the APS organisation?

ingridla I'm in the Midlands. I will try contacting them. If it was just the blood tests, I wouldn't mind so much, but the laparoscopy in particular is not something I want to repeat for no reason, especially as I don't tolerate anaesthesia well at all. I'm just at the end of my rope, you would t believe the excuses I've had in the past for refusing me clexane.

I'm fucking furious for you. Your obstetrician has NO RIGHT to renege on your diagnosis.

This is it, I really didn't know that this could happen. The blood tests to diagnose this issue is two tests 12 weeks apart, so not a big deal if he just wanted to confirm it. I'll definitely contact the APS organisation and see what they have to say. I might also reach out to my fetal medicine consultant, see if he has any support for me.

Ok well then I would request ALL of your medical records and instigate a formal complaint, it's basically neglect and the argument that you could lose another baby, frankly, cannot be ignored. The APS Support organisation isn't a bad place to start:

APS Support UK
The Orchard
White Hart Lane
Basingstoke
Hampshire
RG21 4AF
Telephone: 0300 323 9943
Email: [email protected]

If I can offer support in any way please dm me. I want you to know there is hope, I never thought I would be a mum but my DS came in 2016 after years of hell and losses. I'm here for you and will do everything to help you through this. Xx

Thank you so much, it's appreciated more than you know!