ERA EMMA ALICE testing thread 9

[Gardenlady543]

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Spin101 @Loz2467 @Mybabydream @Janefx40 @ChickenT2b @kerrym87 @Sar1010 @AM08 @thislittlebird @IVF22 @APSR
@Faithhopelove83 @KLM25 @VenusStarr
@BewilderedBee @Dochas12111 @seven201 @StillWishingHoping

We've maxed out the other one so here's thread 9 😊

@Loz2467 I'm sorry, I was worried about this too as my clinic don't do transfers on Tuesdays or Sundays, but actually there is some degree of timing that can be achieved in a natural modified FET, essentially they will monitor for the follicle to be a minimum size and the lining to be a minimum thickness and triple lined, once this is achieved they can time a trigger (hcg), the LH surge will happen the next day and ovulation the day after, so you will transfer 7 days after the trigger. My clinic liked to add in fyremadel to stop me ovulating, but this shut my body down twice and also I've heard it affects implantation. They told me it wasn't supposed to shut down the body as it did mine but did admit that's clearly what happened in my case. So in the cycle that worked I didn't take the antagonist and I used LH sticks to check I wasn't going to naturally ovulate over the weekend and then triggered on the Monday. While I was in a 2 cycle package and technically you have to pay if a cycle is cancelled, my cycle ended up getting cancelled twice (firstly because the antagonist shut down my body so I was put on the OCP and came back with a bleed and then with the bleed I had grown a follicle so needed to trigger and start again!) and they just counted it all as one big long cycle.

@Loz2467 feeling like this is normal in this process, and I'd definitely enquire/push to try modified natural. My clinic didn't wait for me to naturally ovulate this time (my NHS one did), once the follicle was big enough they gave me Ovitrelle and scheduled FET for a week later.

@SallyLovelady Thank you! It’s so hard to keep going isn’t it. I’m hoping I’ve not found the reason yet and eventually it will work but I’ve always been so nervous about the patch of adeno on my lining which developed after our second trimester loss back in 2021. That’s what caused my adeno in the first place :( I’d definitely like to try modified natural due to the implantation window and less estrogens but still no reply from my clinic. Are you approaching transfer? Or making any changes.

Another option was to test my embryos but that’s a further 4.5k or more and we’ve spent 20k just this year so I’m not sure that’s on the cards yet. I think 3 failures is something with my lining / uterus / adenomyosis.

@Gardenlady543 That’s interesting I didn’t know they still had some degree of control. I don’t know what days they don’t do transfers as there might be some days during the week too. I’m not sure. Interesting about the femregryl too. I do remember you posting on here when you was having those issues.

Im not sure whether to see an RI or Dr Gorgy? Do they work alongside your clinic? But it would be ERA that’s my issue and not immunes. As I had the pred and blood thinner anyway. I just like to feel next steps are in place when feeling so down and low. It’s so hard to keep doing transfer after transfer isn’t it.

@SallyLovelady I think 3 things have helped me: the fibroid surgery, the natural modified FET rather than medicated and the immune plan. At the same time I'm in implantation failure groups and at some point people seem to just get lucky, it could have been that this has just worked for me because after 4 years something just a aligned right and it may never happen for me again. I've seen people think they've got the formula with a history like mine, have a baby and then not be able to have another doing the same thing multiple times after.

@Loz2467 My friend saw Dr Gorgy and her specialist didn't believe in immune stuff, so Dr Gorgy prescribed the meds as add ons. When I first saw Dr Gorgy he told me with my history we just had to try everything when it came to cycles, so different types of modified natural etc, and to consider with suppression if things didn't work. I really don't believe in the ERA I think it's more likely to be an indication of something being wrong eg fibroids or microbiome in my case, rather than something that can be shifted about.

@Gardenlady543 its just so hard isn’t it. I felt hopeful as I’d thrown so much at this cycle / transfer for it to just fail again. I don’t know when to give up. I have had a look and it does say on a few research pieces that implantation window alters with adeno? Would you take these with a pinch of salt? I do obviously have the adenomyotic cyst on the lining but it shouldn’t be active due to the down Reg. Also nothing I can do to remove it as it’s not encapsulated like a fibroid apparently. I did do doxy and then oral probiotics and vaginal probiotics or is there much more when it comes to microbiome? If I do have the trio tests I might aswell do all 3.

I guess their other thing is ivf success is cumulative so more tries equalling success makes sense. It just feels like most people succeed on the first or second attempt and then a small pool of people have to try and try and try again. Lots of it is probably luck. I remember how hard I found it listening to that BFN podcast and realising everyone on it was having first or second attempt success, it made me feel like shit. A woman joined later who did struggle more.

For us we wasted a lot of time because no one told us DH had high levels of antisperm antibodies. If we’d known ivf was our only real chance we would have started ivf sooner. Although I do suspect my immune system is a bit too defensive and I wonder if it would have worked naturally even if he didn’t have ASA. Also my age now, but being late 30s didn’t stop any of my friends from conceiving 😩

It's just so crap isn't it, we're rhe ones left who have had at least 2-3 attempts at ivf nit to mention transfers. It's hard to know what to try and not to try /spend as everyone is different. Worried about how much we need to spend, where will it come from, what will we regret not doing or doing. Its such an uncertain path and people just do it without even trying 😔 just want to scream at the 'oh it was an accident ' or the 'yeah were gona ttc again, last time was 1st cycle' then bam, there they are again with their seemingly effortless fertile unicorn tendencies! 🤣
Considering LIT but pooled as 1) my husbands hov etc was done within last 18 months but Dr gorgy wants within 6 months so it'd be an extra 350 and 2) perhaps pooled might give better response due to more than one type of antibody source? I'm just fed up it'll be 6k before we even try our next lot.of ivf....

@Loz2467 it depends what those studied looked at, if they said well we did all these ERA and in adenomyosis patients we noticed they all tended to be pre receptive then to me that's different than saying and so we adjusted the timing and a lot more got pregnant. Because the studies coming out on ERA now are looking at what happens when a non receptive result happens and we don't change the timing, there's an abstract on this and it made no difference compared to adjusting the timing.

@thislittlebird there is a very good infertility and repeated implantation failure group, it's the only place I found where you don't get people coming in saying well I just had 1 cycle of ivf that didn't work.

@kerrym87 donor pooled works out cheaper because you don't need to pay for the viral tests. I needed to have it because of the full HLA dqa1 match but my husband was in 2 of my 5 sessions as one of the donors

@Gardenlady543 I’m not very good with studies but this is one that I found so I’m not sure? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6333039/

I just really don’t know what else to test / do but I always feel like I need a plan to work towards to try for the next transfer even though sometimes I feel like giving up.

to get LDN or hydroxyclorine do you need to be under an RI like dr gorgy?

@kerrym87 totally feel your pain. It’s just devastating. I just can’t bring myself to do anything / go anywhere living in fear of announcements etc. Just really didn’t imagine this after our 20 week loss 2.5 years ago.

@thislittlebird I think that’s what it is. You see if working first / second time for so many people so when you’re hitting 3 complete failed implantations I’m thinking why! Especially because I did the down Reg for my adeno etc.

Girls,
I found an article I've been looking for from the content of the course I did, It is about the prevalence of chronic endometritis in repeated unexplained implantation failure and the IVF success rate after antibiotic therapy.

After the results' section it goes through the different courses of antibiotics recommended for different bacterias:
https://academic.oup.com/humrep/article/30/2/323/726170?login=false

xx

All of this resonates so much. The frustration, the fear of hear announcements. It can become a bit of a living hell. And it’s such a difficult thing for those who haven’t experienced it to grasp.
It’s really difficult to accept when there’s nothing obvious to blame too.
@Gardenlady543 difficult to know for sure but the stars aligned for you eventually. Definitely going to take immunology more seriously. When we tried in UK and I used to point out my eczema flare ups my consultant used to tell me I was fine to not worry 🙄 all pre-chicago tests.
I had a hysteroscopy done in Jan, a bit of scar tissue which they got rid of but nothing else. Fast forward a few months and now I have 2 fibroids. New consultant tells me they don’t concern her. They’re not bigger than 1mm. What were yours like? This is new for me haven’t had them before.

@Loz2467 I’m in tww, had two blastocysts one AA one BB. Not feeling confident since I felt a flare up wish I’d had more predisonolone and since found out aspirin can impact implantation.

I’m on 10mg predisonolone (had to make a case for this I’d been on 5mg previousl transfers)
4 utregestan tabs vagina let (I spotted and came on past two transfers and this has really stopped haven’t had a thing)
3 cyclogen
clexane
aspirin

We’ve got a blastocyst frozen too which is great to have at the back of my mind.

That’s really understandable around price of testing it’s astronomical. Have there been any indications there’s an issue with embryos is male factor ok? In terms of other micro biome things in addition to probiotics I do think have an anti inflammatory diet is really helpful. And natural forms of folate and B12.

3 cyclacur not cyclogen!!

@Loz2467 it's not a very big study, they defined implantation failure as two unsuccessful embryo transfers which is a pretty odd definition! "Out of 17 patients with non receptive ERA (displaced WOI) in this group, 16 completed pET (personalized embryo transfer) with a pregnancy rate of 62.5% (10/16). However, there was a high first-trimester miscarriage rate of 40% (4/10), and 20% (2/10) of patients had a biochemical pregnancy in the pET group." These aren't great statistics 10 became pregnancy with 2 chemicals and 4 other losses.

@Vicky81B there are a few studies looking at the impact of improving the microbiome, I am very much for this as the treatment is not invasive and it's worth correcting.

@SallyLovelady I take it you mean 1cm rather than 1mm? I doubt they'd even see a 1mm fibroid. The one I had at the top of my uterus was 10mm to start but got to about 20mm over time, they told me it would cause no issue as it wasn't submucosal and then I developed a second one which was definitely submucosal and was 10mm. They both came out in the operation and they were both submucosal! If I did the operation again I would have gone to Greece and had robotic surgery, I needed open surgery in the Uk and it was a brutal recovery.

I'm struggling so much with a cough today :(

@Gardenlady543 oh I do! Largest is 11.3 x 7.9 x 10.2mm (910.55 cubic mm). The consultant said she’s not worried because of where it is. Really not sure what to think. That sounds so brutal! But in your case could have been so important.

I hope your cough gets better!

@SallyLovelady

Essentially if they are submucosal they need to come out whatever the size.

If they are elsewhere they need to come out if they are very big or causing symptoms.

I'm my case I was told the fibroid I had all along wasn't submucsal... but it was.

This is a before and after of my uterus, so even though you would think 1-2cm is small, the uterus of someone who hasn't been pregnant is pretty small to begin with. I've outlined the fibroids in red.

Feel anxious af. I'm at that tww phase where it feels like your period is starting and I hate it, three days until my period would be due. Stupid recruiter wants me to do a pre-interview chat tomorrow and I don't want to but I will just in case this fails and I want to interview in an attempt to move elsewhere.

@thislittlebird how do you feel about testing? By 7dp5dt you should have a clear answer with a sensitive test. If you start getting any spotting, if you know it's positive then you can increase up progesterone.

@Gardenlady543 i’m going to see how tomorrow goes, I really don’t like testing early but did when I felt like I needed to on my chemical cycle. Because I’ve got this “informal interview” and the boiler guy coming here half the day, I don’t want a negative test to totally derail me. Not that I have any tests lol

Sounds sensible @thislittlebird I'm terrible for early testing, in my chemical I had the faintest ever invisible line at 5dp5dt, it was clearer at 6dp but I mean the lines were so light and it was never going to be a good outcome. So I told myself the next cycle I definitely wouldn't test at 5dp and would try and wait until 7dp, but then caved at 6dp.

@Gardenlady543 that’s blown my mind. There’s me thinking they’d be insignificant. What a difference!! If this transfer doesn’t work think I need to consider another hysteroscopy 🙄

@thislittlebird I totally get it. Halfway through is a horrible mind game and bring around people trying to act normal can be tough.

I’ve been told to wait until 12dpt which is Sat am waiting until then. Would be due on next Tues and have had the worst cramps!!!

Welcome @SallyLovelady
Good news about the progesterone @thislittlebird hope the pre-interview chat goes well.
@kerrym87 sounds a huge amount to consider and annoying that the documentation for the consultation was lacking.

I am in extra sensitive place right now but finding it a little difficult with some posts here and other infertility boards that I feel aren’t exactly sensitive to fact that, while I know secondary infertility, or trying for second again via IVF is hugely hard, are not being particularly sensitive to those who have no children and facing a real prospect of never having any. So am going to step away for a while until I’m in a better place. Sending lots of positive vibes to everyone on their next steps.

@Enfys23 thanks! I can relate to that, hope you feel better soon. It’s good to walk away sometimes to deal with it all.

@Gardenlady543 I’ve never been a tester, I think it just stresses me out so much because it’s that evidence of yet more failure and the confirmation can be such a punch in the gut. I think my last couple of cycles I’ve know they haven’t worked beforehand due to breakthrough bleeding or migraine or some sign and then I’ve done a test to confirm.

I’m in the Facebook RIF group! Don’t really use Facebook much but have searched for things on there a few times.

@SallyLovelady are you in the tww too? I might totally have missed this, I was skimming stuff yesterday.

@Enfys23 thank you, and really sorry to hear you’re feeling that way. Totally understandable though and you have to look after yourself.

@thislittlebird I am! Until tomorrow when it’s over ha. I woke up in the night with excruciating cramps.
I’m like you I can’t test early - not sure if it makes me soft I just can’t bring myself to do it I feel so nervous.
Had two blastocysts put in last Tuesday. Not feeling too positive about it for a few reasons now.
How are your cramps? Really know what you mean by the time around which you feel due on btw it’s so irritating

@SallyLovelady honestly it makes me feel sick! Just the thought of it brings me out in a cold sweat.

Tbh I don't get period cramps or any other symptoms, beyond migraine, not on my period and not in my tww. The only time I've had any cramps of note was when my chemical pregnancy was ending and that was notable!

Why not positive? I say this as if I'm ever anything but pessimistic lol. I've just had a lot of hunger and off/on nausea mostly, which could be the meds. Have to keep reminding myself they've increased progesterone.

So my informal job chat went well, I think. It's basically the job I'm doing now but for 5k more and they would let me request fully remote work, and that's the main attraction for me because we want to move away. I'll continue with the process and will have to see where it goes, but if I was to get an offer down the line I would be asking for fully remote. Bit mad to consider a new job if the ivf was to work, but it really is a good opportunity if it is genuinely remote, without caveats. Time will tell!

@thislittlebird fingers crossed on multiple points! I'm impressed you were so focused, my brain is normally scrambled in tww.
Anyone know if fertility academy is only place in UK doing LIT? Turns out we can't do purely donor as not enough so we'd have to pool with hubby's anyway. They want £350 worth of tests before they'll do LIT so bang goes our original idea.