ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

Sorry things have been tricky for you this week @Gardenlady543. I found my treatment cycle to be such a juggle. I don’t think I’ve heard of one clinic that has been satisfactory when it comes to admin but this is taking the p*ss…

Thanks guys, for those that did modified natural FETS with letrozole- when did you start your progesterone? I'm speaking with someone that starts it after about 3 days after the trigger so I'm probably best to just ignore all the ERA stuff and follow the advice they tell me.

@Enfys23 also you know how I mentioned someone whose specialist does the transfer 1 day early in all their patients, well this isn't actually that odd.

They did a study where they asked all the Uk clinics when they do the transfer in medicated FET:

2% of clinics do the transfer on the third day of progesterone
3% on the fourth day
21% on the fifth day
61% on the sixth day
13% on the seventh

So the majority of clinics do the transfer on day 6 but there's a good amount that routinely do the transfer earlier.

doi.org/10.1080/14647273.2020.1786171

@Gardenlady543 that sounds like a stressful start, it's such a frustrating process. What's the ERA decision for you?

I didn't use letrozole for FET but did a few natural modified FET transfers where I was told to start progesterone on the day of transfer, which seems quite late.

Brief update from me is that out second cycle was entirely dire and worse than the first in every way, despite higher dose stims. Every stage went wrong, fewer eggs collected, fewer mature, sperm prep on the day was bad and we couldn't do IMSI, fewer fertilised, 3 grade 1 embryos on day 3 and 0 blasts on day 5, only one day 5 morula and some other non-blast that they didn't think would survive freezing today (day 6) so they transferred both yesterday. I'm waiting for the call to tell me the last one is a goner shortly, so no PGT-A for us either. Even the consultant said to me it was shit, so I'm glad he agreed.

The only positives are I got to transfer something I suppose, and this is my first fresh, my progesterone is 311 because it's a fresh cycle and it's never been like that before so that's good. I'm on cyclogest daily, lubion on alternate days and clexane daily.

We won't be rushing into the next (last?) cycle. Will take a few months to work on dh's sperm again, and generally look after ourselves and get fitter, I think.

I've been signed off work for weeks now which has been a relief tbh, from the chemical to this cycle has been horrendous.

I mentioned this before but I took the co-amoxiclav and metronidazole at the start of the cycle/stims and then also the probiotics. I'd be more optimistic about the changes if we'd had even one good blast but here we are.

@thislittlebird I'm sorry it's been such a rough cycle, I'm glad you had something transferred though and the progesterone level is really good! I haven't heard of people having it this high before, so it will be interesting to see what happens, I'm thinking mine might be through the roof with the regime I'm going to be taking, so we can have a competition to see whose is highest! That's good that you're away from work I have had enough with work stuff. Had a really stressful day on Friday as they want me to do something really stressful on Monday and I knew I'd be stressed all weekend about it. I'm sure they think I'm a brat but I said no, I said I'm having treatment and not putting my health at risk to do it.

I'm CD4 today taken the letrozole for 2 days now, first scan is Thursday unless they change it with the protocol drama that's still ongoing.

@thislittlebird I'm sorry to hear about this cycle. It's very similar to my recent one. It's so hard to have any hope. I also was signed off and that definitely helped. Thinking of you ❤️

@Gardenlady543 I didn't use letrozole but had a trigger on my low dose stims cycle. Trigger was the Saturday, progesterone started on the Monday and transfer was the following Saturday. I think @Janefx40 was similar?

We had our review with the ivf clinic and Dr Shehata and its all a bit overwhelming. Frustratingly, the ivf doctor couldn't really answer any questions we had and said he needed to take it to mdt (but they'd told us before booking it they'd already reviewed us). He suggested pgta - erm, we didn't make any blasts 🤷🏻‍♀️ maybe another hysteroscopy, again 🤷🏻‍♀️ for what reason? 🙄 I asked him about missing the implantation window as I'd ovulated one follicle before collection and he said it wouldn't matter as I'd done a trigger, but I'm not so sure. I did have spotting from 8dp so he samuggested being on estrogen as well as my progesterone was still 80 on bets day.

Dr Shehata said no pgta again, we've discussed it before. He's still hopeful for us (good job someone is) and was fully supportive of a break. He suggested we do superovulation with gonal f and letrozole with estrogen. Then consider ivf with their clinic in partnership with Kings Fertility. I've briefly spoken to someone at CRP who is now under them for everything and she said Kings are skilled at taking on complex cases like ours. But, we live in Birmingham. Just not sure how realistic that is. But I've lost faith in our clinic now. I've requested our medical notes so we've got them ready if we do want to move. We definitely wouldn't do more ivf till the summer anyway.

So, my passport arrived and we're looking at breaks away. But I'm debating whether to do a round of superovulation in January, or just take a complete break until April (our leave is Februaryand March and dh cant move these). We've promised not to try at all as he said I'll definitely miscarry not being on meds. Dh is doing sperm dna fragmentation next week as we haven't checked before.

In the meantime, I've joined the gym and am enjoying that, surprising myself with that but doing lots of swimming and classes! It was a year since my miscarriage surgery last week and that was a tough milestone.

Sorry this is so long! I hope everyone is doing well. Love to all ❤️

@Gardenlady543 your protocol drama sounds like the last thing you need, it doesn't fill you with confidence at an already stressful time. I think your progesterone should be good on Letrozole, mine got to over 100 for the first time ever when taking it for OI cycles plus one cyclogest daily, I'm going to ask if it's an option if we ever get to do a FET again. I'm pretty sure the 311 is mostly all those follicles kicking out progesterone and although we only got 10 eggs, I do tend to have a lot more follicles than that at baseline. Let me know what yours comes back as!

It's been nice being off work tbh. My boss has been supportive and I just couldn't handle it alongside the incessant shit news we've had since early October. Not putting your health at risk is a good call, you need to prioritise.

Great to hear from you @VenusStarr it sounds like there's a few things in the pipeline like the dna fragmentation. It sounds like you can implant ok and I think you have said your losses have been euploid when tested. What about normal conceiving but with the immune support in the background, would that put less pressure on vs superovulation? You have some time to try a non-IVF route if you're aiming for summer. The breaks away and gym sounds amazing!

A bit of interesting news, I have mentioned my friend with DOR in the past, who has not had a positive in 4 years of trying, had a early miscarriage on her second transfer and then PGT A tested her blasts and did a FET with one, it didn't implant. Think I said fairly recently how her specialist wrote the most pessimistic letter ever saying there is no hope, even with donor eggs. She started Chinese herbs while looking into other options and is randomly pregnant now the first cycle trying after the unsuccessful FET. Not sure if the herbs had anything to do with it, she will now join the statistics for people who were told there is no hope and then got pregnant randomly right after.

I'm hoping I can join that club one day.

@thislittlebird I will have 2 x 400mg Cyclogest a day, pio every other day and 2 x lubion the alternate day as well as my natural progesterone. My specialists always wants to cancel everything so I hope she doesn't freak out if it's super high. I may as well go all out, I have progesterone hypersensitivity and been told I'm a slow progesterone responder and nothing has worked to date so I may as well go in the opposite direction.

@VenusStarr this whole process is a total nightmare, sorry to hear the review was disappointing. Hysteroscopy and PGT-A suggestions are just annoying, they're not even paying attention. I've considered meeting with someone at Kings, we're going to need to chat some more about DH's sperm with someone in the coming months.

We can both be in the shit cycle club :/ You still don't have any answers as to why, I assume? I have wonder if covid didn't help, dh had it in April, how am I supposed to know when exactly his sperm refresh??? I'm going to discuss a back up frozen sample to the clinic once we've had months to work on everything again. He's having another semen analysis at the GP next week, then we're seeing guys for a late review mid-week and I'll ask their suggestions/referrals too.

I'm 40 in May, which is depressing, and I want a nice holiday slash a honeymoon. Maybe we won't try the last cycle until after a birthday holiday, who knows how I'll feel in a few months.

@Gardenlady543 interesting. I haven't ruled out alternate medicine stuff tbh. My acupuncturist recommended chinese herbs for dh and I'm worried about them having a negative impact so never took up her offer.

My Lister guy was fine with this high result for progesterone, he seemed unbothered and I was relieved because it's better than 10 or 17, which I've had naturally! Hope they don't try to cancel on you @Gardenlady543

@thislittlebird I don't think Chinese herbs are something to pursue while doing treatment. My clinic specifically have a warning on all their letters because of the interaction with Ivf drugs. In her case she was looking into surrogacy and may have gone through more banking cycles in the future but considered the chance of conceiving through transfers in herself very low so I think she thought why not. The herbalist is of course taking responsibility but had told her it takes 3 months to see any effect so I'm not 3 weeks would have made much difference. She would have still had some impact from the immunes she'd done and she had LIT as well. Not sure how she had no implantation with a euploid embryo and then went on to conceive naturally for the first time ever the next cycle though.

@Gardenlady543 yeah that was kind of my concern. Not that dh is having any treatment himself really, but maybe they'll try something new on him in the new year when we see another andrologist/urologist.

I love to hear those sorts of stories but hard to believe it'll ever be us at this stage. I worry about us getting older too. I was up for PGT-A because of my age but it may not be an option for us if we can't get any/enough blasts.

Hi everyone

@Gardenlady543 Sorry I am so useless at remembering my drug regimes but I think I took progesterone something like 5 days before transfer? Definitely cyclogest before transfer but didn't ramp up the dose until afterwards.

@VenusStarr sorry about your review. Always frustrating when the so called experts seem to know less than we do. My friend went to Kings and really rates this. She was definitely a complex case - lots of losses and failed cycles before having one child with her own eggs and a second with donor eggs.

I know it's a long way but I do think it is worth going to a good clinic.

@thislittlebird I'm so sorry about your cycle. Sometimes IVF/treatment just feels like being repeatedly being punched in the face. But you do have a morula in there so I'm still going to hope for a miracle.

Have you heard of Andrew Loosely? He is well known for doing traditional Chinese Medicine for fertility. He's very experienced at working in tune with fertility clinics so wouldn't conflict with IVF drugs. I had a consultation with him and he was great but his programme is very expensive and I had reservations about the whole thing. It wasn't for me. But you could look into it.

Love to everyone x

I worked with Andrew Loosely many years ago and spent a year on his programme. My cycles improved but I feel I wasted a lot of time trying to combat immune issues through nutrition and Chinese medicine when I’d have been as well doing I’ve and taking the drugs. Lovely guy but an intense regime. I’d have struggled to do it alongside IVF.

*as well doing IVF

Hi al. Sorry I've been missing for a while. I've just had a brief skim of recent posts and can see lots of us are having a shit time at the mo. Big love to all.

I've had another failed letrazole round. I'm not in a good place. I've spent most of the day in bed crying instead of decorating the house for Xmas with my daughter. I've realised that my friends and family are pretty bored with my infertility and miscarriages by now. I'm bored of myself.

@seven201 nice to hear from you, I'm really sorry to hear about the cycle. I relate to what you're saying, I am bored of the person I've become as well :( when I was having a stress at work on Friday and said I couldn't do a job on Monday as it would be too stressful and I need to be calm with my treatment, the manager called my treatment "therapy". So clearly I'm coming across as someone who is in intensive therapy.

Gosh having a quick read and so many of us are in the trenches with ttc 😢
i have come on to ask a question- is vagina ph supposed to increase in the days before ovulation? I just tested and it’s above 5 and I’m panicking having spent the last month trying to sort the lactobacillus and bv. Grateful for any knowledge please x

@Lori2022 it's supposed to increase around menstruation and ovulation, it's super stressful I got myself really worked up pre menstruation when it went to 5 out of the blue right at the time of my cycle starting. If there's semen around that will increase the pH, semen is also a trigger for BV so keep an eye.

@Gardenlady543 my gosh thanks so much for replying. I’m a lesbian so no semen. I was 100% mortified when I did the ph test. I’m definitely in the fertile window cm so is the ph normally higher then? Guess I will need to check it goes back down after too x

@Lori2022 a little bit higher at this time, if it's up to 6.5/7 though then that's a problem.

@Gardenlady543 it is 5.5 🤦‍♀️ It’s so stressful isn’t it

I've been trying to post since yesterday but struggling as it keeps reformatting and overwriting sentences. Very annoying.

I just wanted to send love to @seven201 ven201 ❤️ it's so hard to ttc month after month when you've been doing it for so long - I think you're 5 years like me. Its soul destroying. Try not to be hard on yourself and allow the emotions to come. Lots of love.

@thislittlebird tlebird it's a very shit club to be in. We have no insight really, other than neither of our embryos were optimum when we transferred. Neither me or dh have had covid. I know of quite a few women who had covid and immune issues and then conceived soon after. You'd hope that 6 months would be enough for your dh's sperm to not be affected. I hope you're doing as well as you can ❤️

@Gardenlady543 dy543 we have done 6 months of natural ttc on immune meds and didn't have any luck. I think doing it with extra meds, especially estrogen and a scan to know were definitely in with a chance feels safer. I'd have to go down for ovulation intralipids anyway. Just a bit tired of it all now.

Thank you @Janefx40 efx40 I think I am leaning towards moving to King's. Most of it would be at crp anyway, it's just egg collection and transfer at the hospital.

I think we will just wait until April to try superovulation. Gives us time for a proper break, save a bit more money 🙄 and I won't have the worry about pregnancy or loss and trying to squeeze things in.

Hope everyone is well xx

@Gardenlady543 thank you. It's good you're being open with your manager and not saying yes to things that are just too much at the mo. I'm still struggling with work. They just don't ever mention it, I get my appt time approved but no one from above checks how I am.

After my day of crying in bed yesterday I then threw up my dinner so thought I'd caught a big, but actually I think it was from stopping the steroids. And this morning I've got a parking ticked for partially blocking my own driveway.

@VenusStarr thank you. Yes, also 5 sodding years. It's insane how long that is. I don't know how we're both still standing! It sounds like you'll be doing what I'm currently doing (pleas estrogen for you), but from April? I've done two full letrazole rounds (plus 2 that didn't count). I was thinking if we get to the point where we've used up our last embryo and choose to do more ivf we'd probably go with CRP/kings. I talked to a lady in the intralipids room who had done it there and she was impressed/happy.