Help: RiF : Hi Everyone I had fourth... - Fertility Network UK

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Help: RiF

SushiTilly profile image
16 Replies

Hi Everyone

I had fourth failed FET on Saturday, no period.

Husband has low sperm enough to make embyro with donor eggs and got us 5AAs and better grades. We are considering next steps.

just had our follow up with clinic, lots of consider they advised on these tests:

KIR HLA

ERA

PGT-A

Also mentioned the following as well:

KIR AA

KIR BX

HLA C1C1

KIR BYOPS

PCR DNA

I’ve already had test at implantation clinic did in Coventry with Prof Bronson.

Right now we’re both flawed and grieving. We are considering moving clinic as our one admitted in making mistakes along the way.

We both feel totally lost. Not going to make quick decision. I would welcome support. Not sure where to turn now.

I’ve asked for retest on sperm fragmentation again. Seriously I don’t know if I’m being pushed into world of test everything to death…when others say numbers games…constantly cycling in no man land

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SushiTilly
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16 Replies
Millbanks profile image
Millbanks

Hello lovely,

I'm so sorry - I know how hard it is receiving BFN after BFN.

One thing that might be worth looking at is your immune panel. I have heard that if your immune system is high, then it can fight off any foreign DNA. I think this is what happened with us - so even though the embryos were 50% mine, my NK cells were so high that they were just rejecting the embryos.

With DE they are 100% foreign DNA and so your body might need a bit more help accepting them?

xxx

SushiTilly profile image
SushiTilly in reply toMillbanks

Thanks, Bronson said my NK was fine but he had me on tablets to combat potential miscarriages although I’ve never been pregnant. I have follow up with him next week.

I think something with my immune system could be culprit as they did have me on low dosage of prednisone.

💔

ChocoMuffin profile image
ChocoMuffin

Hi SushiTilly, I am really sorry to read it was a BFN. Please do take your time to grieve as it is probably too raw to make any decisions on next steps.

What mistakes has the clinic admitted to? If you’ve lost confidence in them, then yes it may be worth changing clinics unless you both feel it’s too much of a hassle/expensive (in case you have to move embryos).

If you have many embryos left, then I would suggest PGT. If not, then do you feel comfortable putting another back in? I get it’s a really tough choice and shouldn’t be taken lightly.

I think I read you were doing IVF in Alicante? Once you’re ready to think about next steps, if you decide to test for KIR and HLA, there is a Spanish website (TuMedico.es) which is helpful for finding clinics/labs for blood tests in Alicante (or wherever in Spain you choose). Just had a quick look and the test is €199 for women and €139 for men. I’ve attached a screenshot, in case it’s helpful to add up all potential future costs.

Wishing you the best! ☺️

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SushiTilly profile image
SushiTilly in reply toChocoMuffin

Thank you ChocoMuffin. I am grieving and don’t have right headspace to make decisions.

Clinic messed up meds first time round, second time nothing changed in the protocol even before I had transfer they said do era…then last one they gave me prednisone. I had five different doctors and admin team couldn’t write treatment plan properly. I am inquiring with another clinic. I am currently with clinic in Alicante and they admit to their mistakes.

Thanks so those prices are not horrendous. So it’s blood test? She was talking doing biopsy after tests etc another fet won’t be until April or May. The wait is too much.

ChocoMuffin profile image
ChocoMuffin

I’m so sorry you had bad experiences with your clinic - it’s the last thing you need when you’re already under so much anxiety! My previous clinic (in the UK) was pretty shite and once I realised all the mistakes they made, in addition to making a complaint and refusing to pay a cancellation fee (when it was their fault!), we quickly moved to another clinic (abroad).

My understanding on KIR/HCL is zero tbh! I’ve googled about it previously as have seen a couple of posts on this forum of women having been diagnosed. I think it’s just a blood test although results take a long time (just like for the karyotype). The biopsy your consultant may have mentioned could be the ERA?

Anyway, hope you don’t feel like you have to rush into anything. Take however long you need to recover xx

SushiTilly profile image
SushiTilly in reply toChocoMuffin

Thank you. My body is crashing today so I’m off work recovering. I’ve got appointments lined up with Dr Tim Child to get second opinion, and new clinic in Alicante to get informed. Either way we’re not in position to make decisions. The post FET failure knocks me out. Very dark time but I’m no robot. It can feel dispiriting.

I’m sure some of tests make sense that’s why we had one with Bronson. I appreciate something could be knocking off success.xx

Wuhu85 profile image
Wuhu85

Hi Sushi, I am very sorry what are you experiencing. After 2 fails I pushed my clinic to do the immunological panel and my immunologist tested me for KIR AA what I unfortunately have. Right now we are waiting for the HLA-C genotyping. Of my partner will have more C2 gen as I have than it is a problem and different approach is needed. There is a treatment to that with Neupogen. Mostly Spain did a research about it. I do not know why clinics waiting so long with testing and let you experience so many failures. ❤️

SushiTilly profile image
SushiTilly in reply toWuhu85

Thank you wuhu85 - I had sane questions to my clinic on why allow so many failures as I’ve never heard of those tests. Sorry your suffering, is there something they are changing in your protocol? Not heard of neurogen. Il have to research it. Xx

Wuhu85 profile image
Wuhu85 in reply toSushiTilly

It is called Neupogen what I know. This thing is relatively a new thing with most research in Spain. It can also be that you are ok and it is not your issue. So if I have it than I have to switch the clinics most probably because in the country where I am undergoing the treatment they have no treatment to it and starting with testing right now.

Kdkdjsjsjs profile image
Kdkdjsjsjs

Hi lovely

I know exactly how you feel. Me and my husband have been trying for 6 years (never pregnant) and in December we had 4th fet and it failed again with 5aa embryo. It's incredibly devastating. I also had all the genetics test done and immune test and they still are saying they cannot find a reason why I can't get pregnant. I have changed the clinic but same results. We got to a point where there are no more tests just keep trying. Last 2 transfers were in slovakia. We are now seriously considering a surrogacy in Ukraine as I don't known if I can go through another failed transfer. Still have 6 embryos left. It will cost about 40k. I know this might not be right for you just wanted to say it's one of the options and at the moment I am leaning towards this as I feel I am just wasting great embryos 😌 I also feel lost and I kind of lost hope I will ever be pregnant. Sorry this is not a super encouraging post but I know how it feels. You are not alone in this. I still cannot comprehend how they can't find a fault yet in 6 years never been pregnant and done 4 transfers with excellent grade embryos.

SushiTilly profile image
SushiTilly in reply toKdkdjsjsjs

My heart goes out to you, that is really heartbreaking. All this suffering and toll in iur bodies. I feel like empty shell at the moment. Today is physically worst for me.

I can understand you want to take surrogacy route. Worth exploring if they choose the person they would expect to find best. I can appreciate the frustration. Sometimes I think why not do all the test as starter package to completely understand couples physical profile then do ivf and transfer. I had to heavily question the doctor yesterday, after last failure why not do all the tests. Then it’s not easy because I read the guidelines many say it’s lacking proof. In the end it’s a numbers game…when I have to almost wait three months for another try…it could be lot more years. I have considered surrogacy also stopping all together. I went down to DE route so I don’t have any embryo. Don’t worry about your response it’s important to me that people share their true experience. Helps me not to feel so lost. 😞

Ranie profile image
Ranie

You need to do ALICE EMMA for infection of the endometrium testing, it puzzles me why noone has told you this! Is the no1 cause of RiF and treatable with antibiotics!

SushiTilly profile image
SushiTilly in reply toRanie

Thanks Ranie, I’ve been to RiF clinic with Bronson last year. a large American trail in the US that showed it didn’t improve outcome of FET. Given HFEA and ESHRE don’t rate it to help RiF patient it looked expensive if these add on do work then clinic should make it part of their IVF package and NHS would offer it. Think given it’s still inconclusive it’s hard to say, I’ll be getting follow up review. Sadly I don’t have budget to do lots of tests.

Ranie profile image
Ranie

Well based on my experience if i hadnt done the microbiome and the subsequent antibiotics i wouldnt have gotten pregnant, and a lot of other ladies in here as well. I would argue the same for the immunological anti rejection testing, is probably too expensive to consider crucial, when an enterococcus for example is found in over 90% of human uteri due to contamination in female anatomy. If you dont have any lactobacilli the uterus is infertile. If you dont want to do the testing at least start supplementing withvaginal probiotics from mouth and from vagina, is new evidemce and very very verycommonsense. Am only trying to help,have no profit in advising youthis. Best of luck xox

SushiTilly profile image
SushiTilly in reply toRanie

Thank you Ranie. I’ve started probiotics now, and getting follow up on immunotherapy tests and hopefully I will get support. My current clinic said they’d send me details through, already they failed to do it. So I do get impression another clinic is better but I’m going to push for some refund and they’re crap. Thank you

OnRoundEleven profile image
OnRoundEleven

I'm so sorry to hear of your journey so far.

I want to let you know that your experience doesn't necessarily mean that it won't work ever. There are no promises, but I'll share my experience in case it helps you.

I was like you and had my first four transfers fail. None of these four embryos were PGT-A tested. We transferred clinics (to ARGC in London), did immune tests, DNA fragmentation test, thyroid tests, and most importantly PGT-A tests.

For us, it transpired that from a batch of 5 embryos that looked good under the microscope, only 1 was genetically normal. I have had a few collection rounds and it has always been a similar story - many look ok, but only 1 embryo per collection was ok.

I also discovered that I had thyroid issues and an overactive immune system, that I need to have a drip to counteract, plus steroids.

Well after those tests and treatments, we then transferred the PGT-A tested embryo and I have a 2 year old son as a result.

It doesn't always work (we have had a few failed implantations since), but there is always hope.

Finally, two clinics have told me that they can precribe antibiotics then one can take probiotics for the womb (vaginal pessaries) afterwards and this can negate the need for an ERA test (if costs are becoming an issue).

I hope this info is helpful and good luck.

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