I may be jumping the gun here and i’m open to be told i’m being ridiculous!
I’m 33, have a very high AMH, short luteal phase of 5 days and some signs of PCOS (High follicle count, slightly raised testosterone but normal LH/FSH balance and i ovulate on my own)
The nurse i met with last week was confident we should qualify for NHS funding in my area but also suggested my PCO(S) was linked to inflammation and scared me a bit when she told me PCOS patients have more issues with implantation and miscarriage.
There is a waiting time of about 3 or 4 months until I will have a meeting to find out if the funding application is successful. In the meantime I am on no fertility medication and i’m aware chances of conception on my natural cycle with a 5 day luteal phase are very low.
Being impatient I was therefore wondering if a proactive thing to do ahead of IVF would be to look into any further testing that may be beneficial, so that my journey when transferring embryos is more successful (if i’m lucky enough to make some good ones).
I’m aware of the ERA test to identify the optimal time of transfer, as well as the Alice and Emma tests. I’m also aware of NK cell testing which may be relevant to me given potentially high levels of inflammation. However, i know these are usually offered to women with recurrent failures and there is some controversy regarding their efficacy.
I was wondering if anybody with experience of these tests would recommend doing them as a “no regrets” options ahead of IVF, or if i’m being ridiculous and impatient, as of course i’ve never seen how my body reacts to an embryo transfer yet so i’m naturally not in the groups of women who have suffered recurrent implantation failure.
Thank you for any advice on this. I realise i’m over worrying and trying to control the unknowns, so do hope this doesn’t offend those who are going through failures and truly need further testing x
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CarlottaD27
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Kudos to you for wanting to be prepared and staying in the know! It totally makes sense to want to get those tests out of the way. If you are doing frozen transfers (which is preferred if you want to test your embryos for viability prior to transfer), I believe that ERA/EMMA/Alice tests can wait until after you’re done creating embryos. Creating blastocysts is one of the biggest hurdles in the whole IVF process, so perhaps cross that bridge first. Then, based on your health history, any new diagnoses, and how your body reacts to the stims, your consultant can help you choose the right tests to prepare for transfer.
That said, I’d definitely raise these questions at your initial consult. Staying informed throughout all of this is key. Good luck x
Thank you for sharing your advice on this! The ERA/Alice/EMMA tests do look potentially helpful but you're right that i need to check in with my Dr on this... I suppose i'm already planning and worrying ahead! x
Interestingly, the science on whether these tests are relevant anymore is ever-changing (like the ERA). By the time you’re ready for transfer, there might be some new test that’s supposed to be even more accurate. I’ll be prepping for transfer early next year, so I totally am doing the same amount of worrying “ahead” 😆
I agree with Poppygarden about squaring your diet and starting supplements (a good prenatal, coq10, maybe DHEA).
Hi Carlotta, wishing you well over the next few months.
I’ve had similar tests after a few failed transfers and the results have been very helpful, in all honesty I wish I’d had them sooner. But I’m sure for most people it’s not needed
The one thing I would recommend is you do is see a fertility nutritionist. I have mild psco along with some antibody issues and I’ve been recommended to change my diet and cut out gluten, I’m also on a whole heap of supplements before my next egg collection.
Hello, really appreciate you sharing your experience with the tests as it does make me think the anecdotal evidence from women for the benefits seems to be there. I've been trying to improve my diet (lower carbs, mediterranean, low refined sugar, etc) but not considered cutting out gluten as i've never had issues with it. I expect it would be good to get a nutritionist's view on this as of course if there's anything I can do or eat (or not eat!) to help then I will! Best of luck for your next collection. I'm on Ubiquinol, Vits V, C, D, Omega, folic acid, etc, so can iagine you're on quite a cocktail too x
Thank you! It really is frustrating when you are doing everything within your control (which by the looks of your story, you really are too!) and yet your body remains unpredictable and uncontrollable in many odd ways x
hiya, I did the era Alice and Emma tests but they are more about womb prep for putting them back in. The nhs don’t offer these tests personally for me I wish I’d done these teses sooner coz we could have ruled a lot of stuff out xxx
They did all 3 with one biopsy. The era came back saying I needed an extra day of progesterone before transfer. The Alice and Emma bacteria and infection were both fine xxx
Good to know they were worthwhile and that extra day of progesterone made a differenxe! It is frustrating how expensive these tests are and the need to go private for various bits of treatment x
Hi lovely, you have a really good chance of success the nurse's comment about implantation/miscarriage is I believe related to higher rates of overweight/obesity with PCOS which leads to lower implantation rate/higher miscarriage. So if you are overweight then doing your best to lose weight will be most helpful. If you're not then I don't believe there is higher risk at all. In fact you are likely to make more embryos 🤞ERA has now been shown to worsen implantation rates so is not recommended.
I am unfortunately in the unexplained recurrent implantation failure camp. (29 when started, high AMH, excellent embryos) I pushed and pushed for extra testing and have done HSG, hysteroscopy, biopsies, 3D ultrasound, NK cell testing and all normal. Looking at the ESHRE guidance for recurrent implantation failure, there is very little evidence for most tests which is why they're not offered on the NHS, but a lot of private clinics offer them as a "why not" and charge lots of money. I didn't do testing until my 3rd failure as statistically at my age it can take 3 good blastocyst transfers to get pregnant. Unfortunately nothing has shown anything but I don't regret waiting as I understand the rationale for it.
You have a really good chance of it working after a few transfers so I would personally save your money and hold tight. If you felt like doing something then perhaps a 3D ultrasound to reassure yourself there are no structural problems with your womb. Best of luck!
Thank you for the reply and for sharing the positivity. After the nurse quite confidently said I’d have inflammation, miscarriage issues and likely face diabetes later in life (despite the fact my bmi is on the low side) all due to the PCOS it really put me in a negative place and Google spiral. Really appreciate you sharing a positive view on it.
Gosh, I read into your profile and history and can’t believe you’re still on this journey as everything suggests you should have a baby by now. I can only imagine how unfair and frustrating it all feels, especially having gone through all the testing. Life can be so cruel and I really hope you’re moving in a positive direction.
Really interesting to hear the mixed evidence on the ERA and I think you’re right that I should save money and give it a go first (obviously I have to get through and make some blasts first). Sending you lots of luck too x
Here is the most recent randomised controlled trial: jamanetwork.com/journals/ja... a review on remembryo which I'm not sure you can access if not subscribed (I really like it as it's very evidence based)
Thank you for linking this! That second study certainly looks robust. I have seen studies suggesting the ERA is beneficial for women with recurrent implantation failure, so I’m wondering if it still has some merits in those cases x
I think it's the same study, just the 2nd one is critiquing it. We've seen 2 specialists in RIF and also spoken to Prof Childs from Oxford Fertility and all 3 of them as well as our consultant have said the ERA is not helpful. I trust them to know what the evidence says. I don't think it does any harm, but feel like we have spent so much money already that it's not worth it. A lot of people start extra testing after a few failures, try something different and have success and attribute it to the intervention when it may well be that they would have had success anyway. There are still so many unknowns in the world of fertility. In your position my advice would be to give IVF a go as it is, if you can make at least 3 good quality embryos you have a really high chance of it working 😊
Thank you very much for sharing that and your experience with Drs. I definitely see what you mean - it’s easy to attribute a successful transfer to an ERA but it may have been something else and / or the cycle someone was going to get lucky anyway.
I will definitely bring this up at my next meeting with the clinic. I’ve heard from other women there that they are generally very anti add ons even after failures, so I’m aware advice can vary dr to dr!
Really appreciate your input on this and interpreting the studies. I’m definitely thinking now I need to focus on being as healthy as possible to try and create a few healthy embryos, as that’s really the first hurdle x
If it's an option, it may be worth paying to see a specialist privately for an opinion while you are waiting to start? Sometimes reading other people's stories and opinions on the internet can be quite overwhelming and confusing, hearing the evidence from another professional may help ease your worries xxx
Also, I’ve just read up on your background on you page and my heart really goes out to you! Life can be so unfair and I really hope things work out - and soon. It must be infuriating not really having answers as the stats should be on your side x
Hello HedgehogMad I've heard this about the ERA, wondered if you know or can point me in the direction of the studies showing reduction in implantation rates? I am not sure whether to keep following the ERA timings on future transfers, a doctor I spoke to recently said it does not increase effectiveness and if anything reduces it but I haven't seen these studies myself. Sorry to interject on your post CarlottaD27
The only test we did beforehand was PGT-A testing on the embryos but I was 36 when starting and we had severe male factor infertility so it was more recommended. But you can’t get this on NHS I believe.
We had two failed PGT tested embryos fail to transfer so it was after that we did ALL the testing!
So we did ERA/EMMA/ALICE, hysteroscopy and immune tests and tests for blood clotting etc. I was given metformin for inflammation and some minor insulin resistance, steroids and blood thinners based on the results and my next round was successful (I’m now 15 weeks). I also had much more progesterone the next time.
Having said that I don’t regret doing the two rounds first because all the testing was extremely expensive and I had seen so many women have their first or second embryo work with no issues. So I think it’s worth waiting to do the testing- but also depends how many embryos you get.
What I would say is that you will need lots of progesterone as that will likely be why your literal phase is v short. The NHS normally just give pessaries but if I was you I would also push for Lubion injection too and I would do that for the first transfer as it’s such an easy thing to add.
Wishing you so much luck and happy to answer any questions!!
Hello! Thank you for your detailed reply and for sharing your experience - it’s so good to read that your perseverance has paid off!
I’m also considering PGT-A as I don’t see the point in potentially wasting time and transferring an aneuploid and it will help me work out whether issues are with the uterus if multiple euploids fail.
Good point about progesterone - in medicated cycles i have just been on cyclogest pessaries so will definitely ask about the lubion too x
Hello, thank you for your reply a few weeks back and i hope you don't mind that I have a question! I have been offered metformin but had a bad experience with it in the past (delayed ovulation and awful gastric side effects) but I am aware that it helps if inflammation is an issue. I was wondering how and which tests helped you to identify the inflammation issue? And seperately the insulin resistance issue? I have had a HBA1C test and my Dr said a glucose or insulin tolerance test isn't necessary as my HBA1C is normal, however i'm not sure that's enough to tell! And you're right on the progesterone - i've needed 2 cyclogest a day so far for each day of the luteal phase x
I have PCOS so have inflammation from that anyway. My HBA1C is always perfect but my RI made me do the test where you drink this sweet drink and they test the bloods before, after one hour and after two hours. They tested both blood sugar and insulin and though both were in the normal range she said that my insulin was higher than she would like to see for getting pregnant. Also you’re often put on it if you’re put on steroids as steroids increase your chance of insulin resistance. That said I didn’t get on badly with metformin- bad tummy and bloating the first week or so only but then was ok after that. I bloat lots anyway so may not have been able to tell!
Thank you for sharing that! I have been asking for that test you mention (I think the oral glucose tolerance test) to try and get to the bottom of whether I could benefit from metformin and since I’m not overweight the NHS nurse doesn’t think it’s necessary … I may follow up privately as it sounds like it has been helpful for your diagnoses. Many congratulations again for getting there in the end! X
well mine came out in the normal range as I mentioned so I don’t think normal doctors would have done anything. But my RI looks at what is the optimal range rather than normal.
The short answer from my is no! Not before! An overwhelming 80-90% do not need any of this further intervention so I'd try without first! I've had almost every test under the sun and in the end, the one I got pregnant on I didn't use much of it at all! (I did have steroids as extra, but not any of the other things tests had suggested!)
Hello! Thank you for sharing that. I’m increasingly thinking that the expensive testing is not worth it (yet!) given the fact the majority won’t need it. I expect because I turn to this website for advice, I see more cases of women needing the tests because they’re the ones coming online for help, we hear less about the ones who have success first or second transfer! Congratulations on getting there after your perseverance! X
Welcome! Have you got any other symptoms of PCOS or had any diagnosis in the past? I only ask as I was told by a nurse early on in ttc that I had PCOS purely based on a high follicle count, and I had no other typical symptoms. I then saw lots of other specialists who said actually I didn't have it and my AMH was great. Re the short luteal phase, I also had something similar as I spotted way before my period and no-one ever took it seriously, which is a shame as I now know that progesterone issues can cause this and it's very easily rectified with progesterone support. Having said all that, IVF is so unpredictable and individual and you've no idea how you'll respond. I had a lot of tests over the years and everything came back normal and I think often once you've ruled out anything major, it's better to get started - you never know, you may be successful straight away, or it could take a few goes and tweaks. The main thing is getting good embryos, and ideally a good number. Then you can always pause to do some more tests if you're not getting implantation, as the embryos are frozen in time.
I’m a bit of an odd case too - AMH over 100 and AFC about 45 and testosterone at the top of the normal range (1.9), but no other major PCOS signs (weight issues, inversed LH and FSH ratio).
For me the fertiliry nurse seemed to think a five day Luteal phase (which absolutely based on what I know about implantation timelines prevents a natural pregnancy for me) was not enough to be awarded IVF funding on the NHS so seemed think the PCOS angle would work. This is probably why the diagnosis has been pushed for me !
That’s good advice re focusing on getting embryos first as I’m certainly jumping the gun and that’s another unknown hurdle first. This journey has been so full of curve balls that a planner like me really struggle.
Normally the funding is awarded if you've been ttc for a certain amount of time and not been pregnant, or had losses etc and I didn't need to have any condition or diagnosis (except infertility I guess!) But I know that each place can have a different criteria so probably the nurse knows that best and is hopefully just trying to help things along. If you're waiting a while to start treatment maybe you could ask your GP or clinic if you could try progesterone support in the meantime.
Yes, makes sense! For my CCG the wait for NHS funding is three years if unexplained but only one of a cause is found, which is why the nurse is helpfully looking for a cause!
I had to pay privately for progesterone supported cycles as my GP wasn’t willing to prescribe it, but that’s a good suggestions and I may try again as it’s certainly a lot cheaper x
I've not heard of that or such a long wait. But then I guess it took us forever to get referred and then even more time to actually start, so maybe it's not too different and we just spent ages in the admin phase. Definitely worth having a 'cause' then. Have you had your thyroid levels checked? That was another thing that delayed us - my thyroid was fine for the normal population but for IVF they want it below 2 and it can take up to 3mnths for levothryroxine to kick in so to the extent you can get it tested and see about starting it earlier that may be another way to speed things up.
So sorry, I wasn’t clear in the year wait, I meant a year of active trying before being eligible, rather than a year to wait for the funding to come through - that would be awful!
I have had a basic TSH test done with the NHS which was normal, but not sure If there are further ones.
Appreciate your advice on all this! I definitely find myself playing Dr as it’s frustrating when you know something is wrong with your body but it isn’t necessarily being recognised or treated! X
MrsOrangejuice sorry for another Q! I noticed on your profile that you’ve had a laproscopy in the past. I was offered one (covered my health insurance) alongside a hysteroscopy for a small fibroid removal. I was wondering if the laparoscopy was something you would recommend? In my case I don’t really think i have major signs of endometriosis and it seems quite invasive, so was just wondering if there were circumstances in that would mean it may be beneficial… x
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