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 @WishingWaiting oh wow what a coincidence! I was still on the fence but hearing that you’re in the same position as me, with nothing else to explain the condition, this may well be what I have. My fertility specialist only mentioned it for the first time on Thursday but clearly didn’t think it could actually be this because specialists don’t seem to have Ashermans to the coil.

Out of interest did you have any issues with your coil? because as far as I’m aware mine was inserted fine, in the right position and removed without any issue. I wish I would have known this could have happened and just not had the bloody thing. You must be really upset/annoyed/angry, I at least have only gone through 2 transfers, for you to go through 7 x IVF AND 5 x miscarriages is horrendous. How long from the surgical procedure do you have to wait before you can have another IVF? also out of interest how did your egg collections go? I ended up with 9 blastocytes, I feel like there needs to be some kind of alternative pathway for investigations for people like me that get so many embryos but yet they never implant. Luckily I pushed for these tests very early, it was only when the specialist didn’t get a sample on the ERA that she mentioned this condition. I have my appointment with Mr Trew tomorrow, I’m really interested to hear what he thinks the next steps are.

@Gardenlady543 I had my surgery jan 19th. Then had oestrogen and progesterone . Af was 19th feb. Then 2 weeks later a check up so could have done my FET mid March March with period start but I did my ERA.
Mr Trew May work differently though . All the best tmrw and update us xxx

Thanks @Cream123 I worried as I’m with access fertility, it says I can’t have more than 6 months between cycles, I think I will need to have a transfer around July/August, and that’s pretty tight given that I’ve heard he only operates once a month and I’ll need investigations first, especially if those things are linked to cycle timings. While I could do a transfer to reset the timings, it seems very silly to do any form of transfer until this is at the least investigated.

Oh yes I’m with access too - I didn’t know this about the 6 months??? I did my fresh in October and my frozen still hasn’t happened? Unless we on a diff plan.
Don’t worry things will be clearer tmrw push mr trew to get things done ASAP and I think by tmrw u will have a clearer picture. I think don’t transfer until this is sorted it would just be wasting a blast :(

Yeah @Cream123 I agree and since I’ve paid for the access package and Pgt-A these embryos are expensive!!

I’ve been going to through the FB support group, from what I’ve seen he’s going to say book in for a HSG. I hope so, I really really want answers ASAP.

It’s in the programme termination section, I mentioned it to my specialist who didn’t seem aware of it, she said it’s not like I’m having a 6 month rest and that if needed she will talk to them. I may see what Mr Trew says and then give them a call tomorrow or in the next few weeks. I found them to be really good in the past, so hopefully they make some exceptions for this stuff.

I wonder if access will allow you to delay if a doctor informs them that it's more likely to succeed after a problem has been treated. It would be bonkers if they insisted on carrying on despite there being a known problem that can be fixed. Not in your interest or theirs. Perhaps email access to ask?

@Gardenlady543 yes trew seems to do hsg so if there is scarring he knows where and then he goes in and fixes it . Ok totally didn’t know that and not mentioned to me by clinic. And now can’t find agreement
Good luck tmrw x

@Cream123 you should be able to login to the access fertility website and it’s on there towards the bottom of the screen think it’s called patient agreement.

I’m thinking with covid they must have had to relax that I always just thought I had 2 years to get through it

Found it - applies to u and me as my ashermans was also unexpected and I’ve been waiting from my fresh in october

change in the Participant’s recommended treatment plan by either Access Fertility or the Clinic’s physician (e.g. a recommendation to change the Participant’s treatment from IVF to IVF with donor egg);

Also says they only sometimes
Review things. And uncommon to pull someone. I’m
Gonna stay quiet!

@Cream123 I think that bit excludes people who have their IVF treatment changed, so if they had planned to go ahead with their own embryos but didn’t get any and needed to change to donor.

This is the bit in mine I’m worried about, do you have that in yours? I agree about keeping quiet if it is, you’ll have to update if they say anything. But like I said my specialist didn’t even know this was in the contract.

@Gardenlady543 it definitely sounds like it's worth looking at! I really wish I had had a hysteroscopy earlier - I didn't as they kept finding other things that could be causing my issues (an unspecified autoimmune condition, a blood clotting disorder, NK cells, MTHFR gene mutation etc - I've always thought that I was in perfect health but apparently not!!) so we thought those were the issue - but realised there must be something else going on when we treated them. It's been a really hard few years, but I'm tentatively hoping that this is 'the thing' that needs to be treated for us to be successful.

I didn't have any issues with my coil whatsoever, as far as I know! I loved it and it worked really well for me - I'd struggled with the pill for years so it was great to find something that worked. But I would never have had it if I'd known that it can cause Asherman's.

I'm not totally sure how long I have to wait until I have my next transfer. I had the procedure on 29th March and the coil comes out on 5th May. I'm hoping that it will be quite soon after that - I'm so done with all the waiting... My egg collections have been fine considering I have low-ish AMH for my age - I got 7 blasts the first time, 6 the second time (3 were genetically normal) and only 3 last time, but all of them were genetically normal. We've only used one of the tested embryos so far so have five left, which is a relief.

Weirdly I had an HSG in Dec 2019 which didn't spot anything, and when I had the ERA last summer they didn't have any trouble getting the sample - which makes me wonder if the scarring has happened since then. I had covid at the same time as my last miscarriage and wonder if the combination could have caused it.

I hope your appointment with Mr Trew goes well - I've heard he's brilliant. x

@WishingWaiting I had that barrage of tests as well! I got told I have 1 abnormal PAI gene (prone to clot) and 1 abnormal MTHFR gene (apparently this is very common), but it wouldn’t explain it. I felt like I was collecting diagnoses I also have a arcuate uterus (a normal finding) and a 1cm fibroid in the myometrium (no impact on fertility). I think if you did these tests on everyone, most people would have something! And I agree I went from super healthy to having all these “issues”. I was reading an article about Mr Trew where he says “we often see women who have not only wasted thousands of pounds on pointless Ivf treatments, but they’ve also lost one to two years”. Wow if I get this diagnosis, this would be me!

I am so nervous, I am almost certain he will say to do a HSG, and that will be stressful, if it’s normal I’m back to the drawing board, but if it’s diagnosed and mild then it could make me fertile.

Hi girls, here is my update...

I had my remote consultation with Mr Trew, he was lovely and answered all of my questions.

He said I should have a HSG which is what I expected him to say, this will be done by the interventional radiologists and this should give a good indication of the architecture, shape and any deformities. He said to stop taking my progesterone today, he will send me a form with a phone number, and I’m to call the number on the first day of my period and they will do the investigation sometime from day 6 to day 14 of the cycle, I should get some info on the day as to the results.

He said to then book a review with him once the ERA EMMA ALICE results are back, he is really glad I’ve had this done as this is really useful to advise further.

If there are adhesions then I will have a hysteroscopy so they can be removed and he can usually get people in within 4 weeks. If everything comes back normal then I may still need the hysteroscopy to have a proper look.

He said there is no link between the mirena coil and Ashermans syndrome, but if I do have Ashermans then it could be due to a low grade infection. I asked him what’s the chance that I have this, he said around 25% chance, but that there is a large margin around that figure. I thought it would be a lot higher, to be honest. But I would rather go into these investigations thinking it’s not likely and hopefully be pleasantly surprised that there is a treatable cause to my infertility. Rather than convince myself this is Ashermans, end up with all normal and results and remain in the “unexplained boat”.

@Gardenlady543 that sounds like a really positive conversation - I'm so glad! It really helps to have a plan of action doesn't it xx

Yeah @WishingWaiting definitely, at the very least if I have all this done and everything is normal, then I know I’ve ticked all the boxes before another transfer.

Great sounds really useful conversation. And sounds like you can get stuff going soon. Fingers crossed it’s just something to tick of list rather than actually ashermans did he say why else she couldn’t get the lining - was it just her technique maybe??

So I emailed igneomix saying ten working days . I’m on day 12 and no results. My consultant thinks I’m mad most likely given the number of calls I’ve made chasing this. I can’t see me starting in ten days :(

Yes I’ve add the immune testing done when ttc for first but I did it under mr gorgy in London - not sure if I believe in all that for my own case but I did it anyways!

@Cream123 he asked me about what happened with the biopsy and I just said what my specialist told me. He said that the thin lining in my natural cycle could be a one off but I’m quite sure it’s always that thin as periods are consistently light.

I think chase away with igneomix, that’s what I’d do.

I feel the same about the immune stuff, I’m not fully convinced. Although I’m sure that would change if absolutely every test comes back as normal.

@Gardenlady543 I'm so glad your appointment was so useful! Great that there's not a huge wait for any of it (first scan and potential hysceroscopy). All little steps in the right direction.

@Cream123 so annoying that you don't have the results yet!!

I know what you all mean about the wasted time. I feel I wasted time on clomid then letrazole, then waiting for surgery to unblock a tube, then trying naturally again, then all the waiting between ivf cycles and tests. It's all such a slog that feels like it will never end.

Thanks @seven201 yeah I was so happy to hear I can get on with the HSG early this cycle and then discuss the next steps.

How are you doing, is it about day 11 of your ERA cycle now?

@Gardenlady543 it's so good they are just getting on with it for you. You're kind of making me want an appt with him but I think I'm jumping the gun and need to calm myself down!

You have a good memory! I'm cd12. Don't have my first scan until Monday and they wouldn't let me book in any others yet. I think my body has mostly got used to the meds now. I felt so rough last week and the estrogen patches blistered by bum a bit where I'd overlapped/used the same skin as I was trying to hide them under my swimming costume! I have also treated myself to a pill cutter for my viagra! Not something I ever imagined doing with my life, but the pill cutter brings me joy .

Slightly off topic but how healthy do you go during FET cycles? My doctor said I should have hardly any carbs (including carrots!), no sugar etc. but I am not good at that! And with the ERA cycle we're meant to act like it's a FET cycle but I again have been a bit lax.

@seven201 in my ERA cycle I kept to this hardcore IVF diet, constant pomegranate and beetroot juice, grains, Brazil nuts, etc etc. And I ended up with thinner lining at the first scan than in my FET when all I could manage was dry crackers due to the vomiting. I concluded that diet and vitamins seem to have contributed nothing and just went back to my normal diet, which is pretty healthy anyway. I think that the meds are what has the biggest influence.

You’ll have to let us know how your lining is at your scan, I had patches for the first tome in this cycle and had skin issues around the edges because of the adhesive. Also I find my symptoms peak at day 7 of estradiol, then I seem to get used to it.

@Gardenlady543 gosh you're good at the healthy eating. I did it (not to that extent) for one of my cycles but I found it stressful not knowing what to eat, and stress isn't good in ivf! I think I'll just make better choices, like brown rice, more veg etc, from now on.

Sorry you had issues with the patches too. I honestly find them worse than bum injections!