Fertility Appointments and Beyond: Electric Boogaloo

[thislittlebird]

Hit capacity on the old thread, will tag you in!

@IWillBeWaxingAnOwl that is amazing news! Everything crossed for you! Hope your anxiety is ok x

@IWillBeWaxingAnOwl tentative congrats to you. Fingers crossed for you X

@IWillBeWaxingAnOwl Congrats my lovely ☺️ I'm glad to hear it's in the right place 🙌 let's hope the good news continues xxx

Thanks ladies.

@Kay00 oh no! Sounds like you had a lot going on so maybe it wasn't the right time for you. Sounds like a plan to take a bit of time out and try again in Dec. Hope your job stuff is all going ok in the meantime (did you also have an interview?!)

@IWillBeWaxingAnOwl sounds like you have had a bumpy ride! Fingers crossed everything stays in the right place for you...

@Tinkerbell098 hope you're surviving the tww and the symptom spotting isn't driving you too nutty!!!

@Tinkerbell098 hope you’re coping ok, not long to go!

@99pctpractice @thislittlebird thanks for checking. I'm alright. Just really really nervous about Friday. OH left abroad today for his cousin's wedding so I will be alone for OTD. I have tried some ICs and seeing VVVVVV faint lines, but unsure if this is still the trigger lingering around.

@thislittlebird have you managed to clear your invoice with the clinic? would they arrange a scan for you or would you go private for it? Hope everything's well. Have you accepted the job offer and which one did you go for?

@Tinkerbell098 fingers crossed 🤞

You can chat with us if you need to while he’s away.

Ugh, long story short: no. Without making this super long, basically they seem to think I’m private because I didn’t have exactly what is on the funding letter. After various emails with finance a finance woman copies the consultant in. I then have his email and copy him back in on my response saying x is what I had, why am I paying for y? Ok cool, he replies saying come in and he’ll do an nhs prescription. Rightio. Then yesterday got stressful and I was bleeding (seems better right now) and I took myself to urgent care (entirely pointless exercise, they referred me elsewhere). So I was stressed at this point. I then went to guys after to see him about the prescription. In the 15 mins I’m with him he agrees I just need to pay for the supplement not the whole cycle. Great. Then he writes them an email and says something about consultant led care uplift. I was honestly just baffled, I’d had a shit day, nothing was resolved and I didn’t have consultant led care, I didn’t speak to him on the phone only email. I said I didn’t have his number and he said ok blah blah (paraphrasing) and he gave me the prescription and I left. I got to the pharmacy, it was not an nhs prescription and might be an nhs prescription if dispensed at Guys. It was entirely unclear. So I spent all day going to two hospitals and achieved nothing. Dh is going back there today for my prescription and I sent a long email to the finance people at 5am saying I do not want them to contact me until they understand I’m an nhs patient. I will not be paying for “consultant led care”, I’ve barely had any care, and I will not be paying for a full FET cycle. I was so upset and annoyed and maybe I should just suck it up but this is all their admin error, it’s not my fault they can’t work out what I’ve had.

I made it super long. I’m very annoyed with my clinic at this stage, they’re a mess.

@thislittlebird oh no! That sounds soooo stressful! So so sorry you're going through this. Could you write a massive complaint to PALS or something? Why have they made it so complicated, just so annoying! Hope you manage to get the prescription soon.

@thislittlebird what the actual... im so sorry this is so stressful for you. Hopefully the spotting is just the embryo getting really burrowed in.

@tinkerbell098 that sucks, we'd have been in that position if our cycle had worked and I was quite stressed about it. We're always here for you x

Oh god now the funding team have called me and I’ve absolutely lost it on the phone to them. That went well 🙃. This funding woman is going to look into it after I shouted and cried in her direction for 20 mins. I said can’t I just pay for the freeze and thaw of the embryo and she said that’s £2000. Erm yes, but that’s included in my funding letter and apparently having a panic attack isn’t enough of an issue for my fresh funding to transfer to my frozen and for my embryo freeze to qualify as the funding kind. Honestly these conversations are ridiculous. Are you really telling me you’re going to perform a gynaecological procedure on a person having a panic attack? Seriously????

@beckyCarlos i read yesterday hormonal bleeding is more common after ivf so that’s good to know.

@Tinkerbell098 I did consider contacting PALS. It’s just so frustrating they can’t make things happen without a complete furore first of all.

@thislittlebird yes my clinic also said that it's completely normal to have some bleeding due to pessaries. Stay positive. I would definitely complain as you've tried to explain things over and over to the clinic and they're only adding more stress to you. PALS have been really good for me before when I was having massive delays with the clinic. Worth a try.

@beckyCarlos thank you ❤I'm so glad I have you girls for support X

Feeling less positive now. Cramping and had a clot when I went to the toilet. I think it’s probably over as soon as it started really, I’ll see what the next day brings. The EPU sounds horrendous when I read reviews online, I don’t see any point in going there to wait five hours for them to tell me the obvious.

@thislittlebird all my fingers crossed for you. Bleeding is more common with ivf babies so hoping that this is just a hematoma and your little bean is holding on tight. Sending big hugs, i am sure it's hugely stressful for you xxx

Ps also sorry your clinic is being so sh1t. What even is consultant led care in ivf?!? It's not like nurses are going to perform an egg retrieval / embryo transfer. Really hope you make some progress in making their invoices go away!!!

@99pctpractice you’ve been through this so probably know more than me, it just doesn’t feel good iykwim. The cramping is definitely more present than it was. Man this process is horrendous, but I guess at least I made it beyond implantation, if it all goes tits up.

@99pctpractice hoenstly my infertility and ivf experience with the nhs has been torturous from beginning to end. From the initial fucked up blood tests in 2020 to the evil gynaecologist to fighting for funding, then this shit treatment by my clinic and now more fighting over funding. I’m so tired of it and I can’t wait to go private. I support the nhs fully but the level of care since we started all this has been a joke.

Guys do nhs treatment, then private self funded (same experience as nhs) and then they do consultant led which costs more. Why the hell they think I’ve had consultant led is beyond me.

@thislittlebird i hope they come back to you with something more acceptable. You've not had anything different than, say if you'd got OHSS and they had to freeze all! I'm hoping you wont need them, but the EPUs around here also get bad reviews, having to wait hours sometimes in the normal obs/gynae area too 🙄 my clinic were also shit. No support at all when things were going wrong, just 'keep taking your drugs and come back for us to stick a wand up your vag again'

I would also like to know what consultant led IVF if.... as far as I know consultants do manage all the care 🙈 nurses might do scans and some can dispense extra drugs, but the consultants sign it all off and do the procedures...

@beckyCarlos the woman said she’d come back to me in three days and I’m hoping she comes back with at least a compromise. When she said about the £2000 for freezing I was just ??????!!!! everyone has that funding if they have more than 1 embryo, why would be paying for the freeze all when you were freezing three or my embryos anyway?

Can I ask what week you got to @beckyCarlos? I wasn’t sure if it was just because it’s very early for me that they don’t give a shit but maybe they just do not give a shit. The experience from beginning to end has been bad overall, the idea of sitting in one of these EPUs seems entirely unnecessary. I guess all I can do now is either pay for some bloods or a six week scan, but I’ll probably just wait for my 7 week one in two weeks. Everything might have resolved itself by then.

I have an appointment with the Lister clinic on Oct 13th. I think I’ll keep it in place for now, but my scan is the week later. I could delay the appointment I guess, the reason I had it is I need to have had a consultation to be able to apply for the Access finance packages.

Oh and consultant led seems to basically be you have their contact details to ask questions, which I had with my Lister consultant but it was included in the price, it wasn’t an uplift. The NHS ivf offering is underwhelmIng.

@thislittlebird whaaat! I can find my consultants info if I want it, and I can ring his secretary (and have done lol) but I'm not charged extra?! I never went to EPU also because I pretty much knew what was happening. I had my 7 week scan where there was a good heartbeat but the embryo was measuring over a week behind, so had a rescan at 8 weeks where there'd been 1mm growth, and the heartbeat was like once every 4 seconds. So I had to go back for ANOTHER scan at 9 weeks, by which point I'd had the miscarriage three days before. But I rang the clinic on the Friday when I woke up bleeding (mixed with cyclogest discharge, dont recommend, it ruined a really cute pair of pants), and explained my situation, and they didn't give a shit, just said keep taking cyclogest and attend on Monday, didnt give me the EPU number, didnt say to call back if anything changed, didnt direct me anywhere (e.g. Tommys). Its a good job I'd accepted what was happening because if I'd been less emotionally stable it'd have been awful.

But....if it helps (and I've not freaked you out) when I did start bleeding, it was super obvious what was happening, and while it didnt 'hurt' all day, there was definite...feeling, before I started getting really strong cramps. X

Well, I never needed to leave here because it looks like it’s all over before it started. I guess I had a chemical. Nothing on the EPU scan, they think Cyclogest is holding off my period. They’ve run HCG bloods but not expecting there to be much HCG tbh. Back to square one we go.

@beckyCarlos after I slagged off the EPU this was pretty decent experience . They got me in and scanned, didn’t have to sit around for ages and they were alright, kind and understanding.

You clinic also sound shit, yes. It’s so robotic to keep saying take Cyclogest and provide no help whatsoever. Honestly the experience for many of us has been awful and we all just have to suck it up.

The clinic have started sending me emails saying I AM an nhs patient after all 🤪. Said they’ll redo my Cyclogest prescription so I won’t tell them about this yet, will get the prescription and tell them in a couple of days.

@thislittlebird oh wow that's great news! Hope you get your prescription soon. Mine runs out on Friday and they won't issue more until I ring up on Friday to say if my test is positive/negative. How did the scan go? Did it put your mind at ease?