ERA EMMA ALICE testing thread 7

[VenusStarr]

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

@thislittlebird good luck for your cycle. When you mentioned natural modified and medicated earlier, I thought you were referring to FET cycles but think you’re referring to IVF? Hope you get some for PGT-A.

@Sar1010 really sorry about your failed FET. You mentioned you started IVF last month and you’ve already had a FET too? That seems really quick? Did you get any implantation or was it a BFN?

@clhiu great news!

@VenusStarr welcome home! You’ll probably be exhausted after all you’ve gone through.

@Gardenlady543 your poor body. I hate putting drugs in my body or anything fake but have had to get used to it big time as don’t have much of a choice :(
My consultant said the same about Menopur and Meriofert.

I'm currently on menopur but there's now a sales issue apparently, I've always been on 75 unit vials but now I'm also on ovaleap on top for next few days as not enough in hosea to add in extra needed.
@VenusStarr so glad you're both home and safe
@Gardenlady543 you said doxycycline makes you feel rubbish I'm really struggling with awful digestive side effects despite max dose buscopan, do you have any tips? Or anyone else? Only just had 3rd dose and it's knocking my gut to pieces already 😪🤢 don't particularly want to wipe out my gut flora it's taken ages to rebuild after covid or create any more inflammation. Not sure o can manage 5 days let alone the 10, although last time consultant didn't even give me it for this reason.

@kerrym87 I only took doxy briefly when I had my saline scan, metronidazole makes me feel nauseated though. For anything that makes me feel sick I take it with food if it allows me to. I also stick to foods I know aren't too rich, like plain salty foods.

Hi ladies, just wanted some advice. Sorry in advance for the long message. After ttc for 3 years and never seeing a positive we went for ivf. I am 34.

To summarise, had a fresh cycle and got two high grade 5 day blastocysts which we froze as I had some fluid in my uterus. Then had my first FET which failed. Then had an emma, Alice, era which said I needed antibiotics and probiotics so did this. Used the lovely @Gardenlady543 ’s approach to tackle my biome with balance activ and canesflor (over did it on these if that’s possible!!) and oral womens probiotics. I’ve just had my second FET and it’s failed again. I even had steroids and aspirin and Accupuncture for the second round. My oestrogen was prolonged a week and progesterone dosage increased as my lining was 7.2 and progesterone 30.2 (the minimum was 7.0 and 30 respectively).

Tests we didn’t do: hycosy (doesn’t matter for ivf but wish we did so I know if it will ever happen naturally!), dna fragmentation, nk cell biopsy and embryo pgt testing.

I really felt this could have been our round but now thinking of going for another fresh cycle makes me feel so heartbroken and defeated.

Any reccomendations for which test(s) would be the best uses of our finances? Will this journey ever end/ is there even a point to keep putting embryos back in for them to not implant? At which point do people consider surrogacy?

thank you in advance for reading my rant. I just feel so lost and alone on this ‘journey’ right now…. 😔 any help would be massively appreciated! Xxx

@Fluffykins33 a saline scan or hysteroscopy can pick up on issues a ultrasound misses, so this is a good option to start with. If you are worried about endometriosis then a lap.

If your embryos are untested then the chance of them working is 1 in 3, so statistically they would want to see about 5 not working before they consider implantation failure. You could biopsy and Pgt a test embryos but there isn't much point unless you have a lot to test, eg you plan on doing banking cycles.

You could consider changing up the cycle, lots of us have gone from medicated to modified natural cycles and a number of us here have had immune tests, but those tend to be done when you've checked everything else.

Thank you so much for your reply. I really appreciate it! I will certainly look into a modified natural cycle and mention a saline scan/ hysteroscopy at my review. I think a lap will be just too invasive for me. I feel like our bodies are going through so much already -maybe I am not as strong as others for a lap just yet!

The statistic about 1in3 also gives me some hope that maybe we just need more embryos for more rounds. 🤞

@kerrym87 The best thing you can do is take a probiotic for a few weeks which is safe in pregnancy. Obviously space it out. It’s called Inessa Advanced Daily Complex. It’s only got 30 tablets but it really works. You take it with breakfast. I take one or two 10 minutes after food. Then avoid a hot drink for 20-30 minutes afterwards.

I had really bad ibs after doxycycline where I was having cramps and almost in tears with the pain. This probiotic is amazing but it must be the advanced daily complex probiotic. Inessa does two. Good luck

Thanks for the kind wishes and advice @VenusStarr @CailinInUK @kerrym87 @Faithhopelove83 @thislittlebird (hope I didn’t miss anyone). I’ve really struggled with this BFN. I think it’s because of the DOR and potential POF issue that people kept saying how precious these embryos were as we may not make more that I’m now petrified about the next stim and if we get any eggs. They’ve told me not to bother with tostran priming (which I would have started today if we are going ahead in May) as it didn’t change things between my first stim with and second without. @kerrym87 think I’ve found the bloke you’ve mentioned thank you I will look into that.
I notice quite a few of you on menopur rather than fsh. Is there a reason why this might be better to have the fsh/lh mix? Wondering what I should be asking for re stims at my review. I guess my updated FSH, AMH etc will help. Did those yesterday.

@Sar1010 welcome! I’m sorry to hear about the failed FET. I did the EMMA/ALICE/ERA quite early in my journey after failed transfer, it’s fine as a test just pricey. I’m sure it’s be reasonable to do another transfer before considering tests but it’s just then how you’d feel if you hadn’t done it and next transfer fails that you need to weight up.

@Fluffykins33 please don’t let anyone tell you evaluating your tubes and uterus properly aren’t important for IVF. It is really important to make sure the cavity is normal and tubes are clear. Hydrosalpinx can leak toxic fluid that affects implanting embryos and abnormalities in the cavity can also affect things. I had Hycosy before starting IVF and the hysteroscopy after 2 failed transfers. You’re young so pgta not recommended usually (as your embryos more likely to be euploid anyway) especially if you don’t get lots of embryos per cycle. Best of luck with things.

@VenusStarr so glad to hear you’re home!!

@Gardenlady543 crossing fingers the trigger works on this cyst and Tuesday’s scan promising.

@clhiu such a relief! So pleased for you.

@2021ivfagain thanks, I'm already taking something similar so that's reassuring, I've found buscopan regularly is helping and ensuring fibre intake. Luckily my vaginal lactobacillus is really established, can't say same for my gut! Took 2 months worth of lactobacillus and other good bacteria and noticed difference when I didn't continue so started taking them again. @Fluffykins33 sorry to hear about your journey, its trial and error sometimes finding what works for different people, we're on 3rd round ivf but never had a frozen embryo yet. The girls.on here have great advice on alternative views and things to look at x

I'm sorry @Enfys23 I'm feeling really low right now as well, so we can keep each other company. I try not to look back about the embryos that are gone now, I think I'd end up in a pit of depression if I did :(

Menopur and Meriofert are made from the urine of menopausal women and are made up of FSH and LH. There are other meds that are also a combination of FSH and LH but are made artificially. Normally in the menstrual cycle FSH increases and then LH comes in, so when you do FSH only cycles you are missing out on the LH. ABC and create use a FSH only cycle with bemfola which seems to work out well for some with DOR and egg quality issues, but when I see ABC patients do it (who have to meet minimum requirements) they seem to have a big drop off. For me the menopur or equivalent cycle works better, but I guess it's up to your specialist as to what they think would work well for you and if you are thinking of a different regime, ask them what they think.

I am feeling incredibly sad today, I keep mentioning this person at work and they've done it again, they asked me to remove my name form a document about a project I set up and run to "future proof" it. I already have no future with infertility, now they're saying this? I told them it upset me and they gave a spiel about it being standard practice but they didn't say this is standard practice, they used wording that has made me feel like they are taking away my future. This person makes the worst times of my life so much worse and I don't know what to do, I'm already at rock bottom. Clearly I'm not my usual self as I have pranked DH for April fools every year and this is the first year I don't feel up to it.

@Enfys23 I think afc is more a reliable predictor. If your afc is higher than 12, you still have a good chance. Also age trumps amh. If you are under 40, you have a much better chance.

Obviously, at 38 I had my main egg retrievals. When I did my one good egg collection at 40, I was on 225iu meriofert and 225iu fostimon every day. That proved good for egg quality. I also took cetrotide to stop ovulation. I was on short protocol. I want to say that sometimes amh testing can be inaccurate. I had it done at nhs without a scan and amh was ok. I had it done with a scan on cd3 testing fsh and amh at CRGH at 38 and it nearly doubled. My amh at 38 was nearly 17. My fsh was 4.9. When I did my first egg collection are lower stims, I had 24 follicles. So please don’t worry. After 40 especially at 41 things can change dramatically.

I was in tears yesterday as I’m still waiting for my swab results to come back. I think I need to go on antibiotics for longer but was told I would get my results yesterday afternoon but didn’t. Also digestive enzymes I think have reduced estrogen in my body. I’m on dhea and looking into safe low dose vaginal dhea to help with dryness. Only problem is they contain cocoa butter. Do you know if things like coconut or cocoa butter would trigger bv-related infections? I asked my consultant about increasing my meriofert every other day to 300iu instead and he said that would be ok but doesn’t think it would help my dryness. I’m taking dhea orally but as I had to wait awhile for it it’s taking time to work.

Just finished second stims cycle and much poorer outcome this time. One to transfer and nothing to freeze. I had a cyst in one ovary that clinic ignored so not sure if that effected eggs. 9 fertilised and 1 day 5. Why is this journey so hard sometimes.

guess I’m joining the people who feel down at the moment!

@Gardenlady543 thanks for this, I’m definitely going to ask to review my protocol for stims and anything else we can try. I’m sorry this person at work is still being so awful - do you think they are aware of it?

@2021ivfagain I unfortunately found coconut oil triggered microbiome changes for me and I got thrush after using.
thanks for the reassurance. I don’t think they’ve ever really told me my AFC. My AMH was 6.1pmol/l when 34 but I’ve not had it retested since and it’s now over a year. I’ve just got confirmation from medichecks my bloods are with them so hopefully not too long to find out my AMH and FSH. I’ve emailed the clinic asking what my AFC is on their records.

@Lori2022 I am so sorry, I know the pain of only having the one to transfer and nothing to freeze. I kept telling myself it only takes one though. Are you having a transfer soon or are you doing it as FET later? Sending virtual hugs.

can I ask exactly what immune testing re NK cells people have had? Was it blood or uterine and what kind of assays? Seems such a wide variety of tests different places do. Also have people had anti sperm antibodies checked? I get a skin reaction to DHs semen so when we were BD a lot (happens less now with all the treatment cycle/biopsy/hysteroscopy restrictions!) I had to use a steroid cream regularly to vulva, which makes me wonder if I could have developed some sperm antibodies too. DH also has autoimmune type condition so he could well be making his own anti sperm antibodies. Just wondering if something worth checking for us both and if anyone has experience.

@kerrym87 i must have just missed out the menopur, sounds like the shortage is a new thing!

@clhiu very glad to hear you’ve had a better update!

@CailinInUK yeah, ivf. I’ve done natural modified FET and IVF throughout, if that’s what you call it, no oestrogen basically.

@Gardenlady543 sorry to hear you’re having such a shit time of it. Be gentle on yourself. My doc switched menopur for Gonal, which I’ve had before and it’s been ok.

@Lori2022 that sucks, we had a terrible second cycle, hoping the third is better but nervous.

@Enfys23 my NK was blood. Makes me wonder if I’ve developed the antibodies too, maybe that could be why I’ve had more issues down there during the ttc years. Dunno though, just a thought. He has ASA so we have to do ICSI anyway, probably not worth seeing if I have it since there’s not much can be done. It’s definitely worth checking for your dh, mine has them and we’re basically fucked unless they improve on their own or ivf somehow works. The only good thing about knowing is we now know the clinic have to do the semen sample as near to egg collection as possible so they have less time to get battered by the antibodies.

I'm sorry you're having to deal with this still @Gardenlady543 it's awful the way you're being treated. Do they have authority to remove your name? I can imagine it feels exhausting to have this on top of everything else ❤️

@Enfys23 I've done both. Uterine first with the implantation clinic. One normal so just had progesterone then had my 4th loss. Next one was very low, so I had sitagliptin but I think that messed with my lining and just had cancelled cycles after that.
My peripheral bloods were more conclusive - normal count but very overactive in pregnancy. I'm on the full immune protocol but that didn't work for my 6th pregnancy either, so got all that plus a drug called gcsf. But not tried it in pregnancy. I feel like the blood test could be more reliable as it looks at activity as well as count.

@Lori2022 I'm so sorry, our last round ended with one morula and nothing to freeze. It's devastating 😢

@thislittlebird 🤞 for this cycle

Will be back later to reply to everyone else! X

Thank you @thislittlebird @VenusStarr
Has anyone had neupogen wash for lining and found it good?

@Enfys23 I use it for low nk cells in endometrium. My lining always gets thick but it’s more to cause a reaction for me with nk cells.

@2021ivfagain you can get oestrogen cream which can help maybe?
@Lori2022 that was me in first cycle, found out in my own during covid that we'd lost other 7 embryos, just take one day a time, sending hugs
@Gardenlady543 it's so hard, is there anyone you can discuss this with at work such as HR, their manager, a colleague who can support ? Sometimes you need an advocate when you're feeling so alone and vulnerable

I'm just at the paranoid and slightly emotional stage of stkms where I have headaches and can't take brufen, doxycycline making us both feel yak but 1st cycle I could actually feel my ovaries and count even bend down properly since day 6 of stims, last cycle I had covid so felt very poorly and can't remember what was ivf what was covid. This time I'm stims day 9 today, dose went up yesterday after starting fyremadel which is usual. I'm just struggling to not overthink everything like although my boobs are like cannon balls right now and digestion to pot I can still bend down and not feeling really bloated in ovary area so worrying its not working properly 😑! 🙄 anyone else worry about stupid stuff like that and feel restless but also so yuk? My husband is very bewildered as my conversation is bouncing all over the place 😂 especially when I forget mid sentence what I'm saying 😵‍💫

I feel really annoyed. My result came back normal but there is no lab report. I asked them to test for atopobium vaginae. The admin staff said they test the bacteria that grows there. Invivo are the only one who do a detailed analysis but it takes a long time. I know I have atopobium vaginae as I’m getting discharge but also feeling a bit dry. I definitely don’t have yeast infection as estrogen is too low and my ph is sky high.

The only choice I have is to do a test with Invivo. Wish I did that earlier. The symptoms are really bad. I keep wiping as the discharge is uncomfortable. I had burning yesterday briefly. The problem is time is ticking for me to do a natural modified FET cycle with stims and my consultant won’t prescribe antibiotics with Invivo. He does not trust them. Everything is a battle. I think my low estrogen is also affecting my low lactobacillus. I read that often the two are connected.

@kerrym87 Already taking dhea orally (only for 2 weeks) and zumenon hrt in oestrogen priming stage but did take digestive enzymes as recommended to break down biofilm. Took them when started norethisterone but they block estrogen I found out afterwards. My nutritionist recommended them.

However, I definitely feel atopobium vaginae also has got worse as I have discharge symptoms and raised ph. So not only are my hormones bad but I also can’t shake the atopobium vaginae which not many labs can diagnose!

@Gardenlady543 Do you know if I can take metronidazole for 10 days. I did feel much better especially with boric acid but nutritionist told me to do more of canesbalance. I delayed the vaginal probiotics as she said I needed to add that first separately. My nutritionist is poorly at present. I was in tears yesterday and feel I will be forced to do a transfer with atopobium vaginae as my hormones are so bad. Gynoflor was going to be my hope after taking antibiotics in oestrogen priming phase. Due to peri menopause, I lack glycogen and lactobacillus anyway. Hrt just improves that a bit but only have lactobacillus Jensenni. The only time this was high was when Invivo said I had early signs of candida.

Thanks for all your support everyone. If this transfer fails we will be stopping ivf and changing direction to adoption. I’m going to try and forget about my microbiome and find my old self or what’s left of her. Going to unfollow this chat.

I wish you all SO much luck on your journeys. You are all incredible people who deserve it all!

Hi everyone,
Just trying to catch-up...

@Enfys23 You're most welcome. That's funny they described it as "sparkling". I got quite annoyed with all the wink wink, nudge nudge, "whatever he's doing, keep doing it!" Then the high DNA frag results came as a massive shock. That was over 18 months ago. I thought that was the answer to our infertility and recurrent MCs. But now it appears I have nk cell / immune issues, which also came as a massive shock recently. I completely agree with you - best to rule these things out than potentially have regrets. I'm sorry you're finding things hard - it is so so hard, especially when age isn't on our side, it just increases the pressure. I hope everything goes well with your review on the 8th and you get a good plan / way forward. Will be thinking of you x

@CailinInUK Thank you so much ❤.
13 stimm cycles?! I am in awe. You must be one strong lady. I've also found that LP works best, although it's gruelling. I found the follicles grow more evenly and this led to better numbers. I so hope this next LP goes well for you x

@thislittlebird Thank you so much ❤
I'm glad to see your scan went well yesterday and you've been able to start on the Gonal-F. I didn't realise you'd used it before, so that's great that you're comfortable with it and have had good results with it previously. Really hope this cycle goes well for you x

@kerrym87 Thank you so much ❤
Goodness, a Neonatal Nurse, I take my hat off to you, that must be the hardest job in the world going through what we're going through! I don't know how you do it. Remind me please, where are you with treatment at the moment? I think you were asking about probiotics a couple of weeks ago and I meant to dig out my protocol at the time but unfortunately didn't manage it. I posted it the other day, hopefully it's helpful x

Thank you @VenusStarr ❤
So glad you're back!! Glad also that your DH is doing ok, although I'm sorry to hear about the added stress of potential redundancy. You're so brave to be getting right back into it with another SO cycle, after everything you've been through recently, and I really hope it goes well x

@Sar1010 Welcome! 🙂I am sorry to hear of your losses and disappointment to date. Glad to see you've been getting lots of advice from the lovely helpful ladies on this thread. I've not had the EMMA, ERA, ALICE tests, but I've had a microbiome test through Invivio Clinica and I posted about my probiotic protocol the other day. Hope that helps x

@clhiu So pleased to hear your scan went well and everything is fine/benign, you must be so relieved!