I hope you’ve had a lovely Christmas, always a hard time of year I find with the fertility journey. I don’t really have a question as such, just more a bit of support/ advice. This morning we found out with a negative test that our 5th embryo transfer has failed.
We have a consultation with Professor Brosen in Warwick in February. Just wondering if there is any advice/ anything anyone would recommend doing going forward?
I’m with NHS and have had one full round, all failed. Have 4 eggs left from my second egg collection. They won’t do any tests through NHS or further investigations as they don’t get funding for it. We’ve never seen a positive pregnancy test and I’m just wondering what could be wrong. We haven’t tested any of the embryos as NHS don’t offer this but have all been high grade which o know can mean nothing. No explanations of what could be wrong, we are in the unexplained category. The NHS have mentioned I have mild PCOS but actually have no symptoms of this and I always have a folicle. Even on my two medicated cycles on oestrogen tablets and patches I’ve had a folicles.
Thanks in advance
Xx
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Lauren80
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Could you pay for the extra testing? I had 4 unexplained fails (all untested) then did a new collection with PGTA and the first one of these worked. The PGTA has been a huge relief for me.
Thank you for your reply, the NHS won’t let you part fund with them unfortunately. Congratulations on your lovely arrival, I can imagine it being such a relief! Xxx
Challenge this because I was initially told the same and now that we are more desperate they are allowing me to test my embryos privately and egg collect on the nhs. If you think about it you save them money by not wasting resources gambling on untested embryos. I think it’s so unfair that different areas have different rules. You’re helping them out by self funding for pgta testing.
I have a long way to go yet as only 8 weeks pregnant but still can't believe it after so many failed transfers. Sadly I had to go private from the start as funding stops at 35 in Oxfordshire and I was nearly 36 when I found this out! 😕 So didn't know you couldn't part find.
I'm very sorry to hear what you're going through. I had an NHS cycle where they collected 13 eggs. I ended up with 6 embryos. 4 of which were very high quality but none of them stuck. It was so frustrating, especially given that all my stats looked good and I had age on my side (I was 30 at the time). Despite having another 2 cycles left on the NHS I switched to private. They ran loads of additional testing, did a fresh collection and adjusted my treatment plan based on the findings from the tests, and I now have an 11 week old son (he was the first embryo put back from that cycle).
Happy to discuss the additional testing I had done (it was pricey, but worth it). It's really hard going through the NHS as everything is standardised. I remember my private consultant looking at my results from the tests and he said that I could've had a perfect quality embryo, but it wouldn't have worked because of the NHS protocol I was on. That was very difficult to hear, knowing I'd invested 2.5 years into something and potentially wasted good quality embryos because the meds I was on during that time weren't working for me.
I'm sure there are loads of ladies on here that can relate to what you've said and can offer advice/a listeniny ear. Best of luck to you x
Thank you so much for your really helpful response, this has made me feel so much better after a lot of crying 😢. congratulations on your baby boy, you must be over the moon with all the heartache you initially had to go through.
I can imagine hearing that must have been very difficult to hear but I do feel it is right. I almost feel they just keep putting them back in until your free rounds are up and it’s so disheartening.
If you don’t I would be really interested in the tests you’ve had done? If you would prefer to pm me. I have paid privately for some immunology blood tests recently. We are very desperate so although expensive it’s all my husband and I want.
Thank you again for your lovely and caring response.
No worries at all! I've tagged MiniCeeCee in as well as she wanted to know too.
I did Era/Alice/Emma testing to check how receptive my womb was to the embryo, if natural killer cells were interfering with implantation, and the bacterial culture in my womb. The kicker was that they found I was pre-receptive, so I needed extra progesterone. So my body was not ready for the embryos they had been putting back. They worked out to the hour how much I needed. The NHS protocol doesn't fully take into account the differences in women's bodies and, if you're pre or post-receptive, it will not work. The tests also found that the bacterial culture in my womb was not optimal. My consultant advised me to take vaginal probiotics.
They also ran loads of blood tests to check for autoimmune conditions. I had these previously on the NHS but, here's where it gets interesting: the perimeters for the treatment of autoimmune conditions are different in private and NHS settings. So while I was never told I had a thyroid condition when I was with the NHS (where my stats fell within their 'normal' range), my stats actually fell outside of 'normal' range within the private setting. I don't know if the NHS making the perimeters broader is a cost-saving mechanism, but my private consultant organised treatment for me immediately as leaving an autoimmune condition untreated can interfere with implantation. I actually only had to pay for the blood tests here (and obviously my time with a private consultant), as the tablets I needed to take were provided by the NHS - they just needed signing off by a consultant.
I also did PGT-A testing. Out of the 11 embryos we tested, 4 were 'abnormal'. One of these four was a 4AA.
I think another primary difference between NHS and private treatment is that private clinics work weekends (well, mine did). Which meant that they cultivate the embryos until they are day 5 before freezing. If you get unlucky with the NHS (like I did) they end up doing an egg collection mid-week, so they end up freezing embryos after 3 days before they shut for the weekend. My private consultant recommended waiting until day 5 to give us a better indication of the health of the embryos, and day 5 is when they also remove cells from the embryos for PGT-A testing.
Another advantage is that my private consultant was able to monitor me a lot more closely than I was able to be monitored by the NHS, which enabled him to get the best possible result. Although I was 2 years older when I came to him, he managed to get 21 eggs out (19 of which were mature), as opposed to the 13 eggs (12 of which were mature) with the NHS.
Hope this helps! It's an absolute minefield, I know. But there's definitely a lot that can be done. Best of luck x
Thank you so much for all this really helpful information. It’s so useful to have this network and lovely people like yourself supporting each other 💓.
CyclingAddict I would love to hear about the additional tests you had too if possible? Lauren80 I’m so sorry to hear you’ve not seen success yet, and I’m sending lots of hope for the future. I’ve had 4 failed rounds, and it’s tough trying to cling on, but I’m just trying to keep telling myself it’s a numbers game for now 🤞 hoping to try a different protocol and PGTA testing privately in my next round! X
Firstly I'm so sorry about the transfer. I know that feels ❤️
I was in a similar situation to yourself had 4 transfers and then paused the clinic to go private to do Emma Alice and Era testing and the nk cell blood test ( Chicago blood tests) it's pricey but can get it all in for 1500-1800£.
I'd highly recommend you approach a clinic who specialise in the above like argc, tommys clinic in Coventry.
Thank you for your reply. I have an appointment with Tommys/ Professor Brosen in February and am paying for the biopsy with him. I think he looks for very similar stuff but not sure if it’s exactly the same. This will be my question during my consultation with him. Thank you, I’ve had a the nk blood test and all came back normal.
I'm not sure if they test for all three maybe worth asking him if they'll do all 3. If I recall the price seems like they do both. They do the uterine sample twice I think too.
The Emma Alice and era are slightly diff as most clinics put you on progesterone and test this way. So they know exactly when to transfer. Etc.
I doubt Tommy's offer that.
Some women have had abnormal uterine cells but normal bloods. In the opposite it's in my blood and not my uterus lining.
Ahh yes I saw this about progesterone with the ERA and didn’t know if Professor Brosen did this. Yes I’ve read that about the uterine being different to the blood tests. Thank you so much for your lovely message 💓 xx
Have you done a DNA fragmentation test for your husband/partner?
We were always told my husbands sperm was great under the microscope but after our 3rd failed transfer we done a DNA fragmentation test.. it cost £400 so is expensive but we found he has really high damaged sperm.
I had a thrombophyllia screen also but that was negative.
We’ve since moved abroad and have done a hysteroscopy, had my nk cells checked and done pgta! xx Good luck
Thank you for your response, this is something we are considering. May I ask where you got the fragmentation test done? Has it helped since to get normal Pgta tested embryos?
First time we got it done with our u.k. clinic but second and third time we used Fertilysis. It was really easy to do at home and we got the results in 10 days x We’ve only done pgta once as my husband wasn’t keen. We sent 4 for testing last month and got one low level mosaic which is borderline euploid. But that’s prob down to the fact I am 40 and i’ve had years of undiagnosed endo which has prob destroyed my egg quality x
Our U.K. clinic just moved us from standard IVF to ICSI and we used the zymot chamber which selects the best sperm but it was our worst cycle ever.
We then moved to Greece and the consultant advised different supplements for my husband. He put him on a daily ejaculation protocol for 12 days. On day 13 he abstained and on day 14 repeated the test and it come down from 33% to 8%. He also increased his exercise, cut down on caffeine etc
So now prior to egg collections the clinic advise all males to ejaculate daily until the day before egg retrieval as research has shown it improves fragmentation
From my experience a lot of it comes down to age (not sure how old you are though). I had three kids no problems at all the third born when I’d just turned 36. Tried a few years later at 39 for a fourth and have constant miscarriages (5) or negative tests now. Only other thing which my doctor has suggested which could be worth it for you based off what you’ve said is a lipoodal flush. If you’re not falling at all perhaps there’s an issue with implantation so this could help
Thank you for your reply, I will look into a lipoodal flush. I was 33 during my first round and I am now 34 so think I am okay with age at the moment 🙏. Xxx
Im sorry to hear this. Lots us here in the same boat. Im waiting for my 4th transfer in the next few days.
My consultant ran some tests on me after my 3rd failed. I had a blood test that looked at blood clotting and my DNA. I wonder if you could pay privafe for that?
Through the blood test they saw i have an abnormal level of blood thickness and something else with my blood (they talk to high end). Because of this I now have to take blood thinners as that may help. Im also going to be taking progesterone injections for a few weeks.
Maybe you could mention having a test (you could lool if they do it in bupa or a private surgery) and mention progesterone (this could help if you bleed early)
Good luck with your next transfer 🙏. Thank you so much for your reply, I’ve paid privately for blood clotting and all came back normal. Not DNA testing, so this is definitely something I can look at, thank you.
Progesterone testing is definitely something o want to push my NHS clinic for.
My fertility nurse/consultant advised it (they only do after a few rounds failing). The nurse mentioned her daughter had IVF and pushed her daughter to get the NHS to order it for her. Its something to consider!
Hi Lauren80, I am so sorry about your negative result. It is devastating although by this stage it starts to feel like just another kick in the teeth doesnt it? I just wanted to give you my story as it is a little different to others. I had 6 transfers on NHS and my sixth was successful. Like you, we were completely unexplained infertility. Healthy embryos and every time we were expecting a good chance of it working and it didnt. They kept saying it was a numbers game and we just had to keep going. We changed to a natural FET cycle from previous medicated cycles. My first of these failed before transfer and the second was successful. I am 34 weeks pregnant now. It is worth looking at the HFEA website about additional testing and add ons. I was amazed at the number of these tests which are recommended on here/on instagram etc which the HFEA don't support. If they are not NHS funded it usually means the HFEA has deemed they do not make enough of a difference to success rates when reviewed. I'm glad we stuck with our sixth in the end and didn't switch to private but it is a difficult decision and you should go with your gut. Hoping whatever you do the next round is the one for you xxx
Hi WillowPark i think we had had a chat before, so happy and glad your pregnancy is still all going well. You are almost there 🙏.
Thank you for your response, I think it probably depends on your clinics as well doesn’t it. I have done some research and some websites say certain testing is worth it and others not so it’s very hard. I spose the only thing with private is you can request more testing.
Dear Lauren, I am so sorry to hear that it hasn't worked for you yet. I think that there is a significant difference going private. We had no luck with our 4 NHS cycles. We then switched to private. They did DNA fragmentation on my husband's sperm, and found that was a problem for us (under the NHS they always assumed it was fine as it looked OK under the microscope). The clinic (ARGC in London) also did immune tests, and gave me intralipids as my NK cells were not in the normal range. They also did PGT-A testing and found that the vast majority of our embryos had chromosomal issues (despite having a high grading under the microscope).
All this lead to us having a son 2 years ago (when just wanted 41 years old). Going private is very expensive - but if you can afford it, I would give it a go. Unfortunately age is a major limiting factor in success, and it can take a while with tests to work out what works for you. Hence, I have prioritised speed over costs.
Sorry to hear about your 5th failed transfer, Lauren It's so hard when we don't have the answers to why the IVF isn't working. It doesn't seem to be much of a science! And it's not even just NHS, the private clinics don't always seem to know what testing to suggest or how to move forward other than it being a numbers game. I am also keenly watching to see what people suggest as I find this community invaluable in providing information that we can act on. Sending love. xxx
No advice but just hopefully an offer of some positivity and hope. I was unexplained infertility though I am older. I had 6 failed transfers of 8 embryos with DE so removing the age factor, yet untested. It was modified natural with prednisolone and clexane that worked for me. No additional tests.
I had failed transfers just before Xmas the past 2 years so I can relate to the feelings you are having to deal with 😢
I’m in similar boat to you. I started in the NHS then went private. Had full barrage of tests including EMMA/ALICE/ NK/PGTA/immune screen etc. I had a biopsy not long ago with Prof B. It’s shown non-receptive uterine environment with the cell types out of sync. There isn’t an easy fix but trying some different things and will re-biopsy in a few months. Happy for you to message if helpful x
Hi GH1986 hope you get your success story, similar to you I’m trying some different things - I wondered if I could ask you about what the difference is with the prof B biopsy, vs the Emma / Alice / ERA tests? I’m trying to weigh up whether to do the Emma / Alice / ERA tests with my clinic, but wondering if I should be doing a different biopsy instead of / as well as this…
Thank you for your reply. I am sorry to hear of your lost recent results with Professor Brosen. I hope they can find something that can work/ help the uterine environment 🙏. Do you mind me asking if the biopsy of Professor Brosen covers/ looks for anything the ERA and Alice tests?
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It's so hard when we don't have the answers to why the IVF isn't working. It doesn't seem to be much of a science! And it's not even just NHS, the private clinics don't always seem to know what testing to suggest or how to move forward other than it being a numbers game. I am also keenly watching to see what people suggest as I find this community invaluable in providing information that we can act on. Sending love. xxx
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