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ERA testing after multiple implantation failures. Anyone had it done?

995 replies

seven201 · 09/03/2021 16:19

I've had four transfers so far (first 3 from 1 batch, fourth from a second egg collection) and 4 BFNs. I have a naturally conceived 4 1/2 year old and had a natural pregnancy with early miscarriage a bit over 3 years ago. My lining struggles to get to thickness, I have polycystic ovaries (on sukkarto), a fibroid, slightly high thyroid thingy (on levothyroxine), high bp (on meds) and a midline septum (ridge/divide in the uterus). I had surgery to unblock a tube 2 years ago. I'm in the healthy weight range.

My clinic have suggested PGS testing (we have 5 embryos in the freezer) but I'm really not keen on it as I've read about actually fine embryos being shown as poor and therefore being disposed of.

They also suggested ERA (endometrial receptor assessment). Has anyone had that done and found it useful? I just hate anything that delays the next FET but I think maybe it will be worth it?

Any other suggestions? Last FET I was on lots of estrogen, extra progesterone injections, clexane, neupogen infusion, aspirin and probably a whole load of other stuff I've forgotten.

I am so fed up with it all!

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bluepixie · 20/08/2021 14:43

I can’t understand why ivf docs miss these things and let us go through pointless transfers wasting our blasts! My 2 normal pgs would never have worked how my uterus was. Despite me saying
Why is my lining not triple why why why
No one would answer me! I pushed for a saline scan but that actually missed it so I shelved it until I have my 2 fails and then I insisted on a scope to also sort my niche out and low behold uterus was a mess!

seven201 · 20/08/2021 14:54

@Cream123 The first time anyone has mentioned a saline scan was today when I spoke to a different doctor at care (I think she usually works at the london one). She says mr lower is great - used to work with him or something. Such a waste of time and embryos! He doesn't know for sure but he guesses it's probably always been there as my dd was breech (he think it was in her way). She must have somehow found a tiny bit of space to implant!

Now it's making me question whether I still want my embryos tested. I think I do!

Don't have private medical insurance no. I did recently inherit some money from my granny - plan was for a kitchen extension, but this is more important.

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bluepixie · 20/08/2021 14:59

Sounds good. I can’t rem how much it cost now blocked it out! I rem anaesthetist was 450 and hosp charge was 1.5 grand and can’t rem lowers….oh wow ok. Maybe that and the niche combined r just not making it a nice place to hang out for the embryos ? Hopefully he can work some magic. How old were u when u made ur embryos?

Gardenlady543 · 20/08/2021 15:00

@seven201 I had in my head that you had something today! I was going to wish you good luck yesterday but then I second-guessed myself and looked back and saw you mentioned 25th August. So really sorry I didn't wish you good luck in advance. Wow it sounds like you've had such an event full day! Those are some really significant findings on the saline scan, I'm really glad you had it. I hope they can get it sorted during the hysteroscopy. Mr. Trew didn't seem that keen on the NK stuff, I asked him at a previous appointment what I could do if I continue to have a lack of success and he said, well some people have things like steroids and it works but it may have just worked at that point anyway. After my hysteroscopy I'd mention that I had booked in for the NK biopsy and he said I need to take that information on board along side, the other information I had. So I don't know if maybe in my case he is suggesting that it will be useful. As I mentioned earlier I think leaving the NK cells while pursuing evidence-based investigations is probably more useful.

For the financial side, I know the ops can get really pricey. Some people have managed to get it covered through their insurance. You should join the Ashermans Facebook group, as you'll find lots of people with these issues, a lot of people on there go to I think it's Dr Nugert in Germany as he's a lot cheaper.

Gardenlady543 · 20/08/2021 15:04

@seven201 I agree about the scan, I've said to people online so many times that I think it's crazy that imagining in the form of a saline scan or HCG isn't done routinely in the UK, it is in other countries. Some people think I've done all these investigations too soon. But I would rather pay for tests than find out I have been wasting embryos by getting a diagnosis down the line.

seven201 · 20/08/2021 15:08

Will be back later to reply properly. Battery running low and I'm in Oxford street picking sunglasses as my bday present.

Embryos - I was just turned 38 when they were collected so prob should be tested.

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Gardenlady543 · 20/08/2021 15:09

@Taurus16

I have had:
Recurrent implantation blood tests, this is a thrombophilia screen and autoantibodies.
Pgt-A of my embryos
Era Emma Alice
Hsg
Hysteroscopy

And I'm about to have NK cells

It sounds like you've had everything I've had except the blood tests, the impact of that is adding on aspirin and heparin if you're prone to thrombosis and steroids if there are autoantibodies.

Sorry to hear about the UTI, hopefully the antibiotics will work against any dysbiotic bacteria left over in the uterus if there is any. I guess it depends what antibiotics you're on though. I think the reason my microflora was so bad was because I had a mirena coil for years and it got really bad. I had no antibiotics to clear out the dysbiotic bacteria, so lactobacillius had no chance.

VenusStarr · 20/08/2021 15:13

Wow @seven201 glad you saw Dr Lower, I've got everything crossed for your surgery. I'm in another group on here for immune things and a few ladies have had children and then multiple losses and found that they have higher or overactive nk cells so it is possible. Feel like you've been overwhelmed with information today, hope you're OK. Birthday sunglasses sound good 😎

seven201 · 20/08/2021 22:16

Just catching up.

@Taurus16 that's interesting about the false passage. Bloody c-section scars - I swear they don't warn you how many issues c-sections can cause! I've had quite a few procedures where they've had to try a few different catheters as sometimes they can't get them in, but always managed it eventually.

@Hema902 . My clinic said today they can't prescribe steroids empirically due to covid, so it must be your thyroid thing.

@VenusStarr I'm glad you're counting it as a win. October isn't too far off now. Thanks for the NK info.

@Cream123 oh god that balloon sounds horrible. He mentioned a stent. Thanks for NK info. Now not sure if I should do that too. It would be the blood test version, not the biopsy version but about 1k I think. I think no for now. I think it might come to 7k ish if I do need everything doing (big adhesion, niche tidy up and cystoscopy) and as I'm pm surgery I might need to stay overnight which costs more! Just hoping I don't need everything.

@Gardenlady543 thank you. No need to apologise, it's so hard to keep up with everything. Thanks for the info. Think I will leave NK stuff for now but it sounds the right thing for you. Good luck for Monday. That's interesting that other countries do saline scans! It's madness to just keep putting in precious embryos without checking they're in with a fighting chance.

Does anyone know if having this adhesion removed will generally help my lining thicken? I didn't ask Blush. It's not completely along the top is doesn't go all along the edge, just generally in the way. I had added a crap diagram!

I was on such a high earlier then had a cry on the walk home as I felt so sad that the last 3 1/2 years of pain has been unnecessary and our five little embryos didn't have a proper chance. It's so easy to look back and regret stuff though.

ERA testing after multiple implantation failures. Anyone had it done?
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bluepixie · 20/08/2021 22:25

@seven201 wow that’s a decent area of scarring and in the fundus ur daughter really did find a special spot! Do u think it could be from ur mc?? Was that after or before daughter

Yes 100 percent ur lining will be thicker after the op. I left after my surgery about 1 hour after coming around I was desperate to leave! But I didn’t need a big op to my niche . Only the smaller one. So I could leave ASAP. The stent is the balloon it’s not fun! It doesn’t hurt it’s just Bloddy weird!

I felt the exact same as u . For a long time I was so angry. I had 2 pgs normal fails and had to do another fresh cycle so 3 cycles coz no one told me to look into this despite all my questioning . And then it was missed on a saline scan. Bearing in mind that cycle no 8 for me over the years on top of all the mc I was just so exhausted from it I still get quite irate about it. Just so glad I went to him and didn’t stop there which I easily could have

It gets very complicated when u start doing immune things. For now u have found a reasonable explanation for ur failures so I think it’s sensible to hang onto that if ur not keen to go down nk route.

bluepixie · 20/08/2021 22:28

Just to add crgh and argc do do hysteroscope and saline scans as their normal before everyone cycles. So some clinics do do it but care don’t

seven201 · 20/08/2021 22:50

@Cream123 thank you. I'm so pleased it should help my lining! I don't think it would have been my miscarriage as it was very early at 5 1/2 weeks so no procedure needed, but you never know. Miscarriage was 3 1/2 years ago, right at the start of ttc for no2 so maybe it was! I had kidney surgery when my dd was 1 and had sepsis and kidney infection (my body doesn't like stents!) after - no idea of that could have impacted there or not. I find it weird that there are some things we just will never know the answer for.

I'm glad other clinics do saline scans. Wish I'd picked one of them! I'm sorry you had such a fight to get where you are now. You have helped so many other people like me too! You should get a job in an ivf clinic! I wonder how many babies you've helped to create? And @Gardenlady543 too with her expertise and advice. Wonderful women. And everyone else on this thread sharing their experiences and advice.

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Taurus16 · 20/08/2021 23:59

@VenusStarr. I guess i'm impatient as just really want to crack on with a transfer and feel my biological clock ticking away. I hate this whole waiting game as i feel like the last 3yrs of my life have been on hold, and continue to be so. But i also think i should get the investigations done properly because if the next FET fails i will always be 'what if i had just repeated that test'....but then i think f* it, i got acupuncture done on my last two transfers and 1 implanted and the 2nd didn't, if its going to work it'll work and theres nothing i can do about it. It's like a ping pong table in my head lol .

Taurus16 · 21/08/2021 00:11

@Gardenlady543. Yeah my checklist seems to be similar to yours, were all your tests normal or did anything come up that could have explained why the embryos don't seem to implant? Its frustrating when no definite answers come up ...i hate those words 'unexplained fertility'

Having no lactobacillus must have been a shock, glad you were able to find out and begin treatment for it. Have you noticed anything different whilst taking the probiotics? I have an acutely retroverted uterus and can be prone to UTIs, i wonder if taking oral probiotics could help with prevention.

Taurus16 · 21/08/2021 00:32

@seven201. I know! I know of two other people who had a c section around the same time as myself and both struggling with fertility. One of them had a laparoscopy and they found significant scarring plus her bladder was stuck to the uterus...but i do know alot of women who go on to have children with no problems after a c section too. I think we just need to trust our gut instinct more and insist on further fertility investigations. After my two failed transfers i insisted on a laparoscopy and hysteroscopy because i just needed to know if the c section had caused any internal complications. I'm going to go and read up on what the difference between a HSG, Hycosy and hysteroscopy is now... all very interesting. You must be relieved you may have found a reason for the failed transfers. Seems like the IVF journey starts the same for everyone but a good clinic will personalise your journey, be open to trying something different and not repeating the same thing.

seven201 · 21/08/2021 00:55

@Taurus16 I'm glad someone else doesn't understand the difference between hsg, HyCoSy and hysteroscopy either. For a long long time I thought they were all the same thing. I still don't know the difference!

The annoying thing is I had a laparoscopy and hysteroscopy 2 and a bit years ago to unblock a Fallopian tube (although reading the notes looks like on the day they discovered it wasn't blocked) and for ovarian drilling (polycystic ovaries) and that's where the whole midline septum thing came from, but that doctor was wrong! So sometimes you just can't win.

It's the waiting that's the killer. Really pisses me off. And the clinic don't ever seem in a rush and just don't see waiting an extra month as an issue!

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seven201 · 21/08/2021 02:17

@Gardenlady543 how do you get your fem dophilus 5 billion seeing as it needs to be refrigerated? I just looked at iherb uk (where I usually buy my vitamins) and in the q&a people say it arrived unrefrigerated. Maybe it just doesn't matter for a short time. I have thrush (again!) that won't shift so I'm thinking I need to up my probiotics!

I can't sleep tonight zzzzz

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VenusStarr · 21/08/2021 08:04

I totally get that busy head @Taurus16 we hit 4 years ttc number one in November and I've spent the last 3 years doing so many tests and miscarrying. It's a lot. You've got to make the decision for what's best for you right now but it's hard!

I hope you got some sleep @seven201 nothing worse when you're lying awake. Hope your thrush clears soon too.

Gardenlady543 · 21/08/2021 08:06

@seven201 with adhesions they tend to tether the lining together which makes it thinner, so it should help to get it removed. Sorry to hear you has a bit of a cry, it sounds overwhelming. I remember after my hysteroscopy finding, not sleeping for a few days thinking about it, and you've had loads of diagnoses come at you in a day. But treating this stuff is definitely going to improve your chances, it will be well worth it.

As for femdophilus people say it only needs refrigeration from when it's open, I'm not sure though and since Amazon is the only place I can get it from where it's not on ice often, I'm also taking optibac daily, with a total of 7.5billion between the two even if some have died off I should still be getting a good amount.

I've been keeping a note of the list of sellers on Amazon, you can select who to buy from:
Detoxpeople - doesn't deliver through prime but sent the correct dose and came on ice.
Frogstar - don't buy from, the first got lost, and then the second package I bought from them was the 1 billion one not the 5 billion one.
Heathy bees- sent the correct dose, sent through prime, didn't come on ice.
Aimojo store - sent the correct dose, sent through prime, didn't come on ice, think this was a second or something as the lid was moulded onto the rest of the bottom, I had to saw it open (not even joking).

I agree @Cream123 has been so helpful, she's encouraged both of us to go to a-listers and we've both had diagnoses as a result!

@Taurus16 83% of my embryos were euploid so it pointed to the endometrium being the issue. I have a MTHFR mutation which is very common, I take methylfolate now, I have a PAI-1 mutation and the C4M2 mutation (specific to my clinic), so I got put on aspirin and heparin, my ERA was prereceptive, from the EMMA my microflora needed treating, the HSG was fine but hysteroscopy showed cervical stenosis caused by adhesions that were removed, but it wouldn't have made a difference to Ivf.

In my last FET I had the microflora treated, aspirin and heparin, a euploid embryo and progesterone timed, and it still didn't work. The lining did seem to have improved though, in the past it was all patchy and thin on transfer day, when the ERA biopsy was done, the lining wasn't actually there just blood was coming out. In the recent FET everyone kept saying the lining looked lovely, I really thought I'd found the answer.

seven201 · 21/08/2021 13:54

@Gardenlady543 thank you once again. I'm so pleased it should help my lining thicken too! And excellent fem dophilus ordering advice. I will try my local health food shops but if not order from one of your suggested ones. Thank you.

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Hema902 · 22/08/2021 20:51

Hey how is everyone? Good news about the results @VenusStarr. How many working days did it take to get results in?

seven201 · 22/08/2021 22:13

@Gardenlady543 good luck for tomorrow.

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Gardenlady543 · 23/08/2021 14:30

Thanks @seven201 I've had the biopsy, Prof Brosens did it and was asking about Mr Trew as they used to work together.

He thought the lining looked ok at the bottom of the uterus which is good, as Mr Trew thought the adhesions could have been creating the illusion it was thin at the bottom. The biopsy went well, with an adequate sample from the first attempt, it was over much quicker than my ERA/EMMA where it took 3 attempts due to my lining not actually being there, which seems to be more evidence that my lining has improved after the microflora was treated. It was a bit more crampy though. They have given me a pot so I can ask my clinic if they will take a second sample at my ERA and EMMA repeat, I haven't spoken to my clinic about this though.

He said no matter what the first result comes back as he wouldn't recommend steroids, they only recommend them after both sample results are back, usually it takes 4-6 weeks but it can take up to 8.

seven201 · 23/08/2021 15:31

@Gardenlady543 that's great that your lining seems a bit better since the last biopsy. Definitely worth doing all these tests I think. I hope your clinic don't mind doing the next biopsy; don't see why they wouldn't do it!

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Gardenlady543 · 23/08/2021 15:37

Thanks @seven201

My only friend in real life that's been having IVF just had a positive pregnancy test. She has DOR and has been through hell so it's obviously great. I feel so alone now though, I have cut everyone out of my life, she is basically the only person I talk to.