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

[seven201]

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!

Hi @Gardenlady543 I was thinking same....when u said thin lining and trouble getting sample and would explain ur bfn
But it’s strange with no surgical history but it’s not impossible. I would get a hysteroscopy before your next transfer (I’m a bit hyperaware about adhesions too though!) go to a specialist to rule it out if u can not a general gynae

Have u had a lapsocopy to check for silent endo too?

Is your lining triple stripe before ovulation / taking progesterone / egg collection?

@Cream123 they always mention the triple lining when I’m on estradiol, nobody has ever said its not there, so I presume this is ok. I seem to get up to a good thickness, 9mm this time and measured at 8.4mm today after the progesterone. But whether there is actually endometrium there is another question. She said it was really perplex, it looked like it was there, she did the suction and should have got tissue but mine was just blood on the first 2 attempts, until she went right up into the fundus.

The hysteroscopy was discussed for the first time today, I’m a bit apprehensive as they can perforate the uterus doing them, we decided if this all comes back as normal we’ll consider it, maybe with 1 transfer first, as I’m with access fertility I can’t have more than 6 months between cycles or the package is cancelled.

I’ve never had a laparoscopy before. I mean I’ve never had symptoms that would make me suspect endometriosis, but as you say silent endometriosis exists. I know there are people that have c-sections and they visualize the most horrendous endometriosis that they didn’t know they had and I can see that many people don’t realise they have it until they realize they can’t conceive.

At the moment my specialist seems to think that this could all be down to an infection. She mentioned ashermans, I said I had the mirena coil for 6 years which was removed in October 2019 and said could that have caused damage, but she was quite sure this wouldn’t have happened.

Gosh I just feel it’s just one thing after another right now. I guess it’s good to seem to be getting to the bottom of things though. My husband has given me a pep talk, said an infection right now would be great, but surely if the infection has caused adhesions, I would need to have them cut out?!

@Gardenlady543 sorry that it wasn't straightforward but it's good they did get the sample and the thickness sounds good. How annoying that they don't post it off straight away! Do your clinic offer hysteroscopys? If so I'd see if you can fit that in maybe next month, before your access fertility 6 month thing, or is that too tight?

@Cream123 sorry your results aren't back yet.

All the estrogen (oral, vaginal and patches) and the viagra have made me very grumpy! They make me sleep badly, feel like I have a bad head cold and just a bit mad at the world. Everywhere I went today there were families with 3 kids. Why are they so greedy with the kids .

@seven201 my clinic don’t do hysteroscopies no, she said she can write a referral either private or in the NHS, there’s a private hospital near me that are advertising them for around £1800, so I’d probably go with that option, with the amount I’ve spent on all the tests so far it doesn’t seem that much. And I can’t be doing with NHS waiting lists that are likely to go on for months. I don’t know what to do, my specialist said to hold off for now, I mean for my mental health that might be a good idea since my unsuccessful transfer in February I’ve had PGT-A, thrombophilia screen, autoantibodies, ERA EMMA ALICE.

Sorry to hear you’re getting the side effects badly I noticed over the last few days that the estradiol seemed to be affecting my memory, I put down the phone after speaking with my boss and it took me an hour to remember the reason he’d called me. I’m constantly telling them the same things as well. Luckily I booked a couple of days off work for this procedure so I can have a bit of a rest and try and get back to normal. Ergg to the families with kids everywhere you go, I saw my friends baby come up on my dogs Instagram account today (I’d hidden her from mine but hadn’t from my dogs), had a bit of a panic/cry. This was my best friend but I’ve not been able to have contact with her for a year now, she started trying at the same time of me and it worked for her straight away. I think I might call my clinic tomorrow and ask to be booked in with the counsellor again, she’d said to book in when I have the next transfer, but with everything going on with investigations, it feels like I’ve been hit by a bus.

@Gardenlady543 I think a counsellor appt sounds like a super idea. I'm not very good at talking about myself in person so I've not gone down that road yet. If you find it helps then you should definitely do it. I also think a private hysteroscopy, when the time is right, is also the way to go. Nhs wait times can be awful, especially at the moment, so if you can afford it it's worth it. Sorry about your best friend. Hopefully one day you can reconnect. I have two close friends who had accidental third babies last year ! Spent many hours jealous crying! So good you have some time off work. Be kind to yourself.

Thanks @seven201 yeah I hope me and my friend can reconnect in the future, definitely not the right time for me to reconnect with her right now, it’s not like it’s just her. I only talk to a couple of close friends these days.

I think I’ll do some reading on hysteroscopies, if my consultant is right and it is a chronic infection then I should think that would need to be treated first anyway, so probably best to wait the 3 weeks for results rather than jump into it.

I just looked at the company that does Era Emma Alice and it says it’s 10 working days for the era result and 15 for Emma and Alice.

@Gardenlady543

Sorry to hear the process wasn’t straightforward but good that the lining was thick and at least you have now done the ERA. My clinic don’t do EMMA (I think it’s MLI test they said I was doing but I’ll check at my baseline as hadn’t heard of that) and ALICE but I would have liked to have had them so good that your clinic is willing to do them for the first time.

I will be pleased when my ERA is over although the wait for the tests will feel long. @Cream123 hope it’s not much longer for your results to arrive. This process is so full of waiting!

Thanks @GreyGoose1980 it’s the same company that process the sample for ERA, EMMA and ALICE by the way and it’s done on the same sample (I’m not sure what MLI is). My clinic have never done the EMMA or ALICE before either, but knowing about the microflora can be really important, I’m so glad that I pushed for these extra tests now that my specialist is concerned about an infection.

So I have now looked into Ashermans and it does seem to tie everything together: thin lining in natural cycles, appearance at thin lining at the last transfer, endometrium that appears to be there- but isn’t, never ever having a BFP, very light periods... although having had no surgery before my only suggestions are that it’s caused by either an infection or damaged caused by the mirena coil, the only other thing I can think of is some kind of structural abnormality. I have emailed Adrian Lower who seems to be the UK expert in the condition, to request a consultant, at the very least an opinion on when it’s appropriate to investigate would be helpful. If he things progressing in with a hysteroscopy at an early point with treatment if adhesions are found, that I’m happy to go ahead.

How is it possible that this journey seems to constantly change day to day, prior to yesterday this had never even been mentioned.

@Gardenlady543 well done for doing some research and contacting an expert already. No harm in making the first steps now.

@Gardenlady543 I came on this thread originally to tell seven to get looked at for ashermans. But sounds like you should look into it....

Lower is the best in uk - I’m under him too and had surgery in january where I had ashermans removed. I have a complicated fertility hx but my ashermans was due to placenta praevia and some Acreta which basically messed up my uterus ! I’m not too hopeful I’ll ever carry again as mine is quite bad but mr lower is the best and I have to trust he’s done what he can. Most asherman patients under him have an excellent prognosis and he can fit u in quickly for surgery etc. Hopefully it won’t be that but def get checked out. Under his hands ur risks are very low. I’ve had 2 with him (also had ashermans after 6 miscarriages before I had my son and he sorted me right out that time). Took me 2 years and 2 failed cycles to work out my ashermans had returned....I also have a c section niche which he very carefully repaired/made smaller as that can impact fertility too.

Who was it who said they freeze the ERA sample and send it off??? How long did they care the results take. Mine was done Thursday 2 weeks ago and nothing back as of today! I want to cycle!!!!!

Hi @Gardenlady543

Thanks for the information on EMMA and ALLCE. I emailed my clinic but they confirmed they would not do this. I didn’t receive any rationale as to why so asked for this. Part of me wants to go elsewhere for the tests and ERA but as I’m due my baseline scan next week it would mean missing a cycle and like the rest I’d us I really want to transfer again ASAP.
Sorry to hear you may potentially have Ashermans but good you have a specialist lined up and there are treatment options.

Hope everyone has a good weekend!

Thanks @seven201 I hope the specialist can see me soon, his expertise and opinion is likely to be really helpful for me.

Thanks for the info @Cream123 at this point I just hope the issue can be explained by something treatable, it would almost be reassuring to know there is an issue. How did you book your appointment with Mr Lower? I emailed the email address on his website at 7:30am but heard nothing back, tried calling twice but no answer. I just want to get something booked in to feel that I’m moving forward.

I asked my specialist “is the sample going by courier today” she said we have to freeze it for I think she said 4 hours and that it will then go off on Monday, I presume this is when a courier was booked. The user manual says ERA take 10 working days from when the sample is at the lab and EMMA and ALICE 15 working days.

@GreyGoose1980 how annoying, with what happened in my procedure yesterday I’m so so glad I’m pushed for these bacteria tests, my specialist said the same yesterday m, that as it might be a chronic infection then these tests which the clinic have never done before are going to be so important. What clinic are you with and have you gone straight up to your specialist, the microbe is so important and if you’re going through this they should let you have all the tests on the sample. It cost me £500 extra for the EMMA and ALICE.

@Gardenlady543 here’s the email and
020 7486 2440
[email protected]

He will prob see u within weeks but the pain is it’s timed to ur period and he only works m w and Friday!

That’s the email I used, maybe I’ll get a reply soon. I’m now in the uk support group, people are saying that Mr Trew accepts more insurance, I’m with Vitality, although I can see it can be hard to get things covered with insurance. How much was your treatment in the end? People are mentioning that Mr Lower is connected with Care Fertility now, is that right, because I’m under Care and that may make things easier when it comes to him accessing records.

What day of the menstrual cycle does he see people? I haven’t got my period yet as my specialist told me to stay on progesterone for a few days to allow me to have a transfer in about a month with the results of the ERA EMMA ALICE, although if I need further investigations then that transfer will be on hold.

@Gardenlady543 I was with Wpa and was covered. Day 2-7 ideally but they will tell u when u ring.
I can’t rem how much it cost as was covered but first appt and scan is about 500 quid he can more or less tell u then and there if u need surgery or u don’t.

@Cream123 do you think it has to be after a natural cycle, as in if I stopped the progesterone and got my withdrawal bleed, would the first few days of that cycle be ok?

Yep that’s fine doesn’t matter if it’s a natural or withdrawal bleed x

Am getting impatient!!! Had it done 2 weeks ago Thursday and if I need antibiotics / probiotics I need to get going.
Looks like 2 weeks is usually when the results come back but maybe Easter has delayed them!
@Gardenlady543 did u get appt? I saw ur posts on the ashermans forum.

@Cream123 so I called Mr Trews company this morning and they’ve booked me in this Wednesday, really looking forward to speaking with him and finding out if Ashermans is a possibility and what he thinks the next steps are. I feel under so much stress right now, you don’t expect to be 18 months into this journey and 2 x IVF cycles in before you find out there might be an issue with your uterus.

It definitely says 10 working days for the ERA and 15 working days for the EMMA ALICE, so it might be a little bit longer to wait. I hope they come back ASAP for you!

I am still taking the progesterone to delay things, if I need an investigation that has to be done in the first few days of the cycle then I don’t want to wait a whole month longer.

@Gardenlady543 I know it’s so upsetting. I know it’s totally different for me as I have a son but I’ve also wasted 2 years and 2 of my
Pgs normal Embryos and then realised I had a uterus which wouldn’t ever support a pregnancy. I got my surgery done in December and I’ve still not been able to transfer - it all takes so long (era added a huge delay as my consultant wouldn’t let me on withdrawal bleeds or do FeT on one either). It’s upsetting to think of the wasted time energy money drugs taken and so forth. So I can imagine it’s times a million for you coz it bothers me. Especially as I asked so many doctors why my lining looked strange on scans and they said “just one of those things it’s fine”. I knew it wasn’t and should have followed my gut.

fingers crossed you may have found a reason for your fails and mr trew can sort it out and give u some answers. In a way I felt better when u found a reason ( especially coming from the completely opposite history before my son (where I had 6 miscarriages and got pregnant just walking into an ivf clinic).

I’m Glad ur appt is sooner rather than later and I hope ur not stressing out too much. I’ve heard mr trew is amazing and excellent.

@Cream123 thanks so much, that’s so seeer. I really hope I get some answers, I know I’m in the hands of an expert on the subject so I’m sure he’ll tell me either way if I’m going in the right direction.

Sweet not seeer lol

I wish I had done same with progesterone now
I saw some people have to repeat their era

Am not doing this!!!!!!

Hi @Gardenlady543 I've just by chance come across this thread and see that we are in a similar position. I've had 7 IVF transfers with no success yet (just 5 early miscarriages). I had a hysteroscopy a few weeks ago with Raj Rai and he found that I had mild Asherman's, which he has dealt with (cutting the scar tissue out, coil for a few weeks, HRT for a month). I have also never had surgery/given birth/had a D&C, but was also on the Mirena coil so it must have been that or an infection that caused the scarring. It's pretty shocking if it's the Mirena coil! I hope you get to the bottom of it all soon x