FET potentially gets cancelled due to... - Fertility Network UK

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FET potentially gets cancelled due to missing rubella test...which could've been avoided!

LRed profile image
LRed
24 Replies

Hi, sorry for the uber long post, but this is really ruining my weekend and possibly my Christmas too. I took a rubella vaccine a long time ago when I was young. When I did egg collection and fresh transfer at a NHS hospital in September, they didn't test my rubella immunity. I started my second IVF cycle at a private clinic in November. I showed them my NHS screening results. They expressed doubt about NHS‘s note on rubella - ''known immunity; not tested'', but didn't ask me to take a blood test. I went ahead with egg collection on 19 Nov and started taking FET medications on 11 Dec.

However the rubella issue came back to bite me hard this week. A nurse told me that some people don't develop immunity from rubella vaccines and I must do a blood test to check if I have the immunity. If I don't, I have to take a booster jab and delay FET by a month. This makes sense. But the problem is timing. They told me this too late. I already started FET medications. My baseline scan is supposed to be the end of December. I have arranged my holidays for TWW in Jan. It is impossible for me to take any time off from February on. What I do is not a standard 9-6 job. It is common to work from 10am to midnight, sometimes even 20 hours into the next morning and for days in a line. There is no chance I can feel relaxed and well rested. This stresses me out and makes me feel that the FET is doomed to fail.

I know I should get a rubella blood test done ASAP. My GP can arrange one for me but I won't get the result until the New Year due to Covid and Christmas. This leaves me no other choice but to do it at the private clinic. It will be two hours travelling on public transport to and from Central London at the height of Covid. Bear in mind I've visited the clinic many times over the last two months when I could have done the test without this additional trip. So many opportunities have been missed. So much time has been wasted.

I feel very confused. Why didn't they tell me to take the blood test earlier? What are the HFEA rules on rubella? Why didn't the NHS hospital test me? Why did the private clinic allow me to do egg collection without a test if they are so serious about it? Is it because rubella immunity only matters for FET? Am I misunderstanding something?

Just a bit of background on this private clinic. They are famous for their high success rate. But they seem very disorganised sometimes. I had to submit my NHS screening results three times so they could be finally seen by someone. Then it took four different people to check through those results, and each spotted something missing in a piecemeal manner. The last one happened in the afternoon of my trigger injection. Someone called me and asked me to come to the clinic immediately to test if I had active Hep B (because I had Hep B antibody from vaccination; all along my NHS test results showed that I had the antibody, yet the private clinic left the active virus test to the last minute). I had to cancel two work meetings with very short notice. One of the meetings was with clients. My manager wasn't impressed. With redundancies going on in my company, the whole thing stressed me out. I will always suspect that the trigger day stress affected my egg quality - only a third of my eggs were fertilised.

Back to now. One month after egg collection, they are still discovering more missing screening tests! The rubella one might not even be the last one. Who knows what more annoying stuff is waiting for me around the corner :(

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24 Replies
Ivfgotadream profile image
Ivfgotadream

I did 5 rounds of IVF and 4 transfers - my clinic decided to ask my for the first time for confirmation of my Rubella immunity on the 5th cycle and final transfer. We were in the first lockdown and GP appointments were impossible to get hold of. I said you’ve let me do this many without bloody proof I’m not cancelling my transfer now!

I don’t know if the rules have changed or something as to why clinics are suddenly asking for it?

LRed profile image
LRed in reply to Ivfgotadream

Interesting. Could the rules have changed between my NHS round in September and my private round in November? I can't believe the NHS hospital could have flaunted the rules as they seemed much more organised and did everything more properly than the famous private clinic. Pity that I was allowed only one round with the NHS! So did your clinic allow you to do the transfer without the blood test in the end? If so, you are very lucky and they are very humane!

Ivfgotadream profile image
Ivfgotadream in reply to LRed

Yes Mine went ahead - I recall they kept asking for it and I knew I’d had it checked about 4 years previously when pregnant with DD and had a rash and it came back fine and I just said yeah I’ll try and get confirmation from the GP - I did genuinely mean to get it but to be honest it wasn’t top of my priority list at that point and I’d done that many cycles with the same clinic without providing it I thought it a bit cheeky for them to ask on the final go! 🤣

LCharlton profile image
LCharlton

Ummm. At my private clinic (we couldn't get NHS funding) I had to have the blood test for rubella before we could get any treatment at all. We were told the HFEA rules meant they were not allowed to proceed without it. But it does sound very weird that they haven't followed up on this until now.

LRed profile image
LRed in reply to LCharlton

Exactly. I don't mind doing the test if it is the rule and it is for my own health and safety. But the clinic needs to be consistent. They can't allow me to go ahead with egg collection without the test and suddenly say no you have do the test and risk cancelling the transfer half way during my FET cycle. This is just not right.

Peony85 profile image
Peony85

Sorry to hear you are going through this. The reason they test for rubella immunity is that getting rubella during pregnancy can be dangerous for the baby. And the vaccine is a live attenuated vaccine so they advise not to take it in pregnancy or up to 1 month before becoming pregnant.

I am not sure why they didn’t test you sooner. I can’t speak for the NHS hospital but at my private clinic they screened me for it along with all the other blood tests before I started treatment.

I’m sorry this is so stressful for you and hope you are able to get this sorted quickly.

LRed profile image
LRed in reply to Peony85

Thank you Peony85. That makes sense. I'm totally up for the test. I just wish they asked me to do it sooner.

try2020 profile image
try2020

Hi that sounds really stressful :( my gp automatically requested a blood test for rubella immunity when we got referred for treatment but the clinic are now saying they want proof of 2 MMR vaccinations, so even though I have rubella immunity and 1 confirmed vaccination I will need a second booster... the nurse said it is now about the measles and mumps aspect 🤷🏼‍♀️ I don't start treatment until March so I have time but it does seem like this is a recent change in guidelines. I hope they will let you go ahead with your transfer 🧡

LRed profile image
LRed in reply to try2020

Thank you try2020. I really hope the 2MMR thing doesn't come up for me with a short notice...Hope it all goes well with you in March x

try2020 profile image
try2020 in reply to LRed

Thanks and good luck to you 🧡🧡

Mimisnow profile image
Mimisnow

Hi, sorry to hear this. You should be able to get a private rubella test ASAP and results should come next day too. Hope you can still go ahead with your transfer 🙏

LRed profile image
LRed in reply to Mimisnow

Hi Minisnow, my clinic is very strict about where the test is done - it must be from a qualified lab and printed on an official headed paper etc. The safest thing is just to do it with them. At any other time, even two weeks earlier, it is not a problem. But now, London is under Tier 4 with the new coivd strain. Travelling for 2 hours on public transport across London really isn't a good idea. I will risk it if I have to.

Sparklylife profile image
Sparklylife

I am sorry you are going through this.

We were approved for one NHS funded round back in 2019 and they did say we needed certain tests before any treatment could start, rubella immunity was one of them. Not sure if it is just different from clinic to clinic then how strict they are checking. They wanted the proof within the last 6 months, so we waited before we had the tests done as we could not have IVF until 2020. We were officially waiting for IVF from April, but knew it could be slightly over 6 months to wait at the time, so I just had to call clinic to keep updated to where we were up to. I was told they needed proof of;Rubella immunity, Hep B test, HIV blood test, STD triple swab and when my last smear test was. They also wanted up to date hormone bloods.

I hope you do get it sorted and can manage to get a test 🤞 Wishing you all the best!

LRed profile image
LRed in reply to Sparklylife

Hi Sparkylife, I went through the same with my NHS round. Approved in Sept 2019, scheduled to start in March 2020, but had to delay. I kept calling them through the summer to check where we were. I finally got the treatment in September, exactly 6 months' delay. Hope your round goes well x

Rainbow1982 profile image
Rainbow1982

Sounds like you need to complain.This almost happened to me, but luckily I managed to get all the tests and Rubella done before my FET.

My clinic was so disorganised and I felt like I was just a number to them too, even though I was spending thousands of pounds on treatment.

They dont seem to realise how much emotion goes into going through the whole IVF process.

I felt like all my excitement and even my nerves had gone at my last FET, because of the way I had been made to feel. I just went in to my FET like it didn't matter what the result was.

I am now 19 weeks pregnant.

Make a complaint, but don't stress too much. It'll all work itself out and will be OK.

Good luck

😍

LRed profile image
LRed in reply to Rainbow1982

Congratulations on the successful FET! From what you described about your clinic, I feel we might be with the same clinic?😂

leo1980 profile image
leo1980

Sorry this is so frustrating for you. Please PM which clinic you at. The ruebella IGG is standard. I interviewed 4 clinics in London before I picked one and all asked for the virology screening upfront, smear, rubella and I think clamidya before we got through the door. It’s a massive oversight when you have far so far in the process. Is your clinic closed now or can you try and get it this week? Wishing you all the best.

Rain415 profile image
Rain415

Sorry I have no advice but reading your post made me angry for you! I'm going through NHS and rubella was one of the first tests they did before I could go through anything else. I would complain to the clinic as it is clear it is having a wider impact and you are paying for all of this just seems slightly unprofessional/ annoying. I'm sure it will all settle, good luck for everything ! X

LRed profile image
LRed in reply to Rain415

Thank you Rain415. I did send a semi-complaints email on Friday afternoon, but only got very robotic replies as if THEY JUST DON'T CARE. I am going to escalate the case on Monday. x

Purpledoggy profile image
Purpledoggy

I am amazed they did not get you to do this before your first ever egg collection - you poor thing! That is very remiss of them. Medichecks do Rubella immunity, which is a home blood test from a finger prick. You could find out if that would be acceptable from the HFEA point of view (ie ask your clinic). The lab are open around Christmas although they recommend if possible not sending to them around this period due to the unreliability of the post. Antibodies are pretty stable, though, so even if it took a week to get there they should still be fine. It might just be an option to save you a trip into tier 4! I was told we had to have the following screening and they all have time limits (in brackets) except Rubella.

I had to have:

HIV 1&2 (3 months)

Hepatitis B Surface Antigen (3 months)

Hepatitis B Core Antibody (3 months)

Hepatitis C antibody (3 months)

Chlamydia (1 year)

Rubella (life)

Hubby had to have the first 4 but not Chlamydia or Rubella.

I don't know for sure that these are prescribed by the HFEA specifically, and in particular the time limits, but it basically means that for every round at our clinic we have to be retested for 4 of them.

xx

LRed profile image
LRed in reply to Purpledoggy

Hi Purpledoggy, thank you so much for the Medichecks suggestion and the full list! I actually received the same list from the private clinic. The problem is them flip flopping - one moment the NHS version of proof of immunity counts, and the next it doesn't. I just got an email from the clinic this morning. All they care is covering their arse. They don't care what I am being put through or even acknowledge that there was anything they can improve in this.

Purpledoggy profile image
Purpledoggy in reply to LRed

Urgh that is such a pain! Yes it's the inconsistency that is so annoying. Really hope it all gets sorted as quickly an painlessly as possible xx

lfren profile image
lfren

Hey,

that sounds like a nightmare, sorry!

We had almost the reverse experience - with our NHS clinic, I received a virology screening really early on, but they didn't actually tell me that I had insufficient MMR antibody levels until one of the final appointments before we were meant to proceed to treatment. I.e. it came up for the first time nearly a full year after having done the virology screening... this, together with some other aspects that we were unhappy with and the repeated delay to our cycle (initially due to start IVF ICSI in June 2020) meant that we switched to a private clinic in London late September.

I booked in for an MMR jab in early October, which should normally be topped up by a second jab three months later. This would have meant that, had the clinic insisted on the full course of vaccinations, our cycle would have been delayed again until the new year. But I repeated the virology screening shortly after the jab - a week or two - (the screening was done with the NHS to meet the private clinic's standards - the two are identical, I think) and had raised antibody levels (obviously, having just had a jab). The clinic was happy to proceed with treatment on that result, even if the second MMR jab was still outstanding.

Basically, a) MMR immunity is a baseline requirement for all fertility treatment, as far as I am aware, so you are probably right in thinking that your clinic probably just didn't handle the different strands of your treatment very well. Your NHS clinic should/would have tested you for virology as part of the initial blood test (AMH, thyroid, etc.) - I found it very hard to get actual test results from them, despite being entitled to these, but I found that getting in touch with the NHS fertility clinic's secretary helped it along a bit. You may have been tested for MMR but the result may not have been communicated to you, as happened for me.

b) if there is any way that you could organise to get a jab at your GP (even with tier 4, I should think that medical treatment continues) and do the immunity test at your private clinic before your FET, the levels should be high enough to let you go through with the transfer. Would be worth asking your doctor though whether there is the potential for harm in getting a jab you don't need (i.e. if your antibody levels are sufficient as is).

Sorry for the long reply, hope it helps at least a bit

LRed profile image
LRed in reply to lfren

Sorry to hear your experience with the NHS clinic. It sounds just as horrible :( I am pretty sure the NHS hospital didnt test rubella for me. They were really good at providing a full set of notes, results, and photocopies of scans etc. The blood test results they gave me says 'known immunity, not tested'. I searched online and realised that NHS has stopped offering routine rubella screening tests because rubella is very rare now.

It is great to know that you gained immunity after a week or two. My clinic suggested I re-test after 4 weeks. That means delaying my FET to March. I simply can't afford that delay (age, work, travel arrangements). So if I need a booster, I'd do a test after 2 weeks.

Thank you for the advice! x

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