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

@Gardenlady543 Acupuncture can also help follicle growth as well as lining.

I’m trying to find the other vaginal pessaries you recommended. Physioflor has gone. What strains does gynolact have? I also looked at Flora Femme but struggling to get these. Are they from America? Thanks

@Gardenlady543 it's so stressful. I'm sorry you're going through this. I did 150iu of bemfola everyday in my recent stims FET with fyremadel. I didn't need progynova but they said at the start they'd consider putting me on it. I did a trigger too. But think my largest follicle went on it's own despite fyremadel x

@Gardenlady543 Sorry about your lining, I don’t have experience of this so cannot help. I hope the clinic suggest a sensible plan.

@2021ivfagain From a sample Igenomix report that I found online where they list the recommended probiotics, I went through the list to determine the strains. I did it rather quickly so best check before you buy. See below. Gynolact is there:

Muvagyn - gasseri and rhamnosus 10^8
GyneCanesflor - plantarum
Physioflor- crispatus
Gynoflor - acidophilus
Vagi-flora - Lcr Regenerans (Lactobacillus casei subsp. Rhamnosus -Döderlein- lyophilized culture)
Invag - not less than 10^9 CFU of lactic acid bacteria: 25% Lactobacillus fermentum 57A, 25% Lactobacillus plantarum 57B, 50% Lactobacillus gasseri 57C.
Gynolact -2 billions cfu lactic acid bacteria, 3 different Lactobacillus strains
3 strains of probiotic bacteria (lactobacillus acidophilus, lactobacillus casei and lactobacillus rhamnosus)
Normogin - Lactobacillus Rhamnosus
Acidif CV - Lactobacillus acidophilus
Febrin - ?

Good luck to all you ladies going ahead. @Gardenlady543 I hope you manage to figure out the lining and your Transfer can go ahead.

Im just in the process of getting all my consents done and package sorted. I’ve opted for a two cycle multi cycle. Is there anything I should be doing ahead of everything?

I need to call the clinic today as it’s cycle day 1 and I’ll be starting norethisterone on cycle day 16 as priming so they can plan everything in for the new year. I wasn’t on this protocol before but they’ve switched me onto it but I feel worried about my thinner lining and wondering if that will make it worst? I’m wondering if it gets all the follicles to similar levels before stimming or is it simply just to plan the IVF egg retrieval etc and transfer day? Sorry I’m new to all this.

I’ve also found the medication significantly cheaper with another site but still delivered by stork. I’m okay to do this arent I?

Thanks for the info about stims guys, I'm just waiting on the call to tell me about the plan, I expect they will say use vaginal estradiol. But I'll see. Feel like I just wasted 3 important days waiting on this scan over the weekend, when something could have been done.

@Loz2467 make sure you're on supplements if you aren't already in preparation. norethisterone isn't really needed as far as I'm aware, but the clinics use it so they can schedule everyone in and plan ahead. It is progesterone, they'll tell you how long to take it for but it's usually at least 10 days, after you stop it you should get your period in 2-5 days and then start stims as planned.

As for where you get the meds from:

• stork is easy to organise, they will have everything in stock and deliver it with the needles and sharps bin.
• if you want to get it cheaper elsewhere you need to check the place can order everything in and may have to wait a few days, in my case they couldn't get gonsai at all, which caused me a last minute panic. You will need to pay for the specialist to write a private and you'll need to get the needles and sharps bin yourself.

So it's up to you, I can tell you what needles to order etc if you tell me what's in the protocol, I'm sure the nurses would also go through this with you as well, but you may find the increased effort and stress not worth the savings.

I hope you get sorted @Gardenlady543 the uncertainty is really hard to bear. It's so disappointing for you 😞 thinking of you.

We're just at crp to do the sperm dna fragmentation. We've had a long, upsetting chat with one of the nurses. I'm as confused as ever. I really need a break but we're running out of time. The logistics of doing ivf with crp and Kings is going to be difficult and expensive. Just not sure we've got another round in us. So think it'll be a total break until April, but I'll restart hydroxychloroquine at the end of February to give us a total break. Then 3 months of superovulation with gonal f.

Hope everyone is OK. I'm sorry to not keep up properly x

@Gardenlady543 hope they can rescue this cycle and you get to transfer. Let us know the update.

@VenusStarr sorry you’ve had an upsetting appointment and feel you’re running out of time. I can relate to that but perhaps from a different angle (my age 😔). Sorry, I’m not up to speed on your story.

@Loz2467 Good luck with your prep. I’ll be cycling (PGT-M and PGT-A) in Jan/Feb too. Do you mind sharing where the meds are cheaper? I’ve usually ordered via my clinic (Care Nottingham) but happy to shop around. I tried shopping around in the past but the saving/hassle wasn’t worth it. Asda usually touted as being cheapest but when I checked mid last year, my clinic was cheaper.

Finally got the update at the end of the day, the nurse called and the doctor had said he wants to keep giving the follicle a chance so to keep doing fyremadel and scan again on Wednesday, but the LH has dropped to 2 and estradiol has gone down as well, to me it's pretty obvious that I can't rely on this follicle.

I was able to speak to the doctor. He told me the drop in LH and estradiol is because of the antagonist, he said I can add menopur 75 iu in today and tomorrow, he said any higher and it will make the leading one grow too fast. He said regardless of the lining thickness he will likely trigger me on Wednesday with a plan for transfer the following Wednesday, he said if the lining is thin on trigger day he will add in medicated estradiol at this point and bring me in to see if it's got any thicker before the transfer.

@Gardenlady543 logged in to see how your scan went and so sorry to hear it's been a tough one. I don't really have anything to suggest at this stage but really hope things improve. Are you back in tomorrow?

@VenusStarr I'm sorry the nurse upset you. Yes it would be tricky doing IVF at a distance. Lots of women from ARGC just stay in London for 2-4 weeks for their cycles. It's an added expense but makes it possible.

@CailinInUK Asda are usually cheaper for some things especially Lubion if you use it. Stims varies - they are one of the cheapest but sometimes others are cheaper.

Best of luck and love to everyone else xxx

Is your lining triple layer @Gardenlady543 ? There's a thin lining group on Facebook and I know some women have had success with thinner lining. My issue is when it's shrunk it's lost the triple layer but if youve still got it, theres hope. Keeping my fingers crossed for Wednesday for you.

Thank you @CailinInUK the short version is 5 years ttc, 6 losses (2 tested as normal). Diagnosed with very aggressive nk cells, my last baby was on a full complex immune protocol and was healthy but passed away at the same point as usual. We're doing ivf now as we also have difficulty conceiving naturally now (first 4 losses were natural pregnancies over nearly 4 years).

Thanks @Janefx40 it's not really what the nurse was saying, moreso that I feel done with all of this and the thought of having to do ivf away from home on my own (no way can dh take 2 weeks to be with me) just fills me with dread. I feel like I'm pushing for something that just is not achievable. We're nearly £30k down now with zero to show for it. Dh got upset earlier too, he hates seeing me broken by this all. So just talking about it today highlights that. I feel like we'll take a break and then it's done. I'm just not sure we can go into a 6th year of doing this.

@Gardenlady543 I’m glad you got the update and sounds like they’ve got a plan in place - your very experienced with all your knowledge too! I literally don’t know anything!

is your lining meant to be triple layered after ovulation as I know mine wasn’t? Or is it just before ovulation it’s meant to appear like this? I really do worry I’ll have lining issues due to the spotting and my thin lining on scans anyway and my scanty periods!

@CailinInUK everything crossed for you! I’m feeling nervous as I’m such a beginner in all this! I’m with care too but in Manchester. I’m part or a care fertility Facebook page and I asked on there and a lot recommended the fertility medication centre. I got my estimated meds protocol from care and this worked out around £850 cheaper! I’m yet to ask about the needles and sharps bin though and I think it’s a £65 fee from Care but still delivered by stork and a massive saving! I emailed them for a quote.x

Thanks @Janefx40 next scan and bloods is Wednesday now.

@VenusStarr the doctor said he looked and it is triple lined. He wants to avoid the artificial estradiol as I think he would prefer a thinner but better looking lining. I just can't help but think it will be exactly the same on Wednesday. And the letrozole seems to have done the opposite of helping, my lining was much better with no drugs last month. I think people normally say 6.5mm and above and I'm under 5mm at the moment and have been since cd8 :( I guess we'll see what happens at the next scan. I think it's all down to estradiol, I am not making much at all, so the other stuff I'm on that will help like heparin is doing nothing.

@Loz2467 yes it's triple lining that is best before ovulation, once you ovulate progesterone is released and that makes the triple lining disappear.

@VenusStarr I think that's totally understandable. It's such an emotionally draining process, but equally hard to know when to call it a day. I'll be taking a break until the Spring, it's hard to even consider it, but we have to.

@Gardenlady543 sorry to hear your cycle isn't going to plan, I'm familiar with that. :/ How did today go?

I'm struggling with the idea of a break until next spring and my 40th birthday next May. I feel like it's all just too late for us, so far to go and I'll be 41 at least before this works, if it ever does. It's really hard to understand how we ended up here, we started ttc when I was 36. We have to take the break to work on investigations and supplements, as well as diet and exercise. I just don't want to do any of it.

Ok update is here, I have been crying for the last 2 days as I was testing my urine with the CB monitor twice a day. When the first line is dark estradiol is low and when it's light it's high. It basically started to show it was going in the right direction and then when I started the antagonist it dropped. Over the last 2 days it stayed the same and then this morning I looked like it had gone up, so I was a tiny bit positive.

The scan started badly, 1 follicle ready to pop at 23mm but the first reading of the lining was 5mm, however the nurse persevered and started getting some higher measurements the best one came back as 8.3mm. She said that if she can get that measurement then that is what it will be, as the lower measurements will be when the uterus is contracting so assured me that the lower measurements don't count. I could see a line but I didn't think that it was a bright white line, but she told me it is definitely triple lined and she followed it all the way up and down to make sure. She ended up taking a lot of images and gave me a couple to go home with so I can reassure myself it looks good. They took my blood and she told me they like estradiol over 500 and mine came back at 636, so this has gone up from the abysmal reading of 269 on Monday.

She said she slipped in to tell the doctor that called me on Monday between his surgical patients and he was awaiting the update and looked through everything and said he's really pleased. He thinks it's the menopur that helped the most, so I'm very glad I suggested this as an option and happened to have some.

So the plan is:
Trigger tonight
Progesterone starts on Friday, they're going to decide if they think I should start at a specific time and let me know
Progesterone blood test on Tuesday
Transfer on Wednesday

@Gardenlady543

So pleased your transfer is going ahead. To be honest, I’m surprised they didn’t opt for stimulated FET cycle from the start. That is what I’m doing and it really works well.

I had my consultation today and it looks like I do have high and low nk cells. The high nk cells are not too high but higher than what he wants, but also low as well so I’ll be on a cocktail of drugs for the transfer in January.

It seems like letrozole with 75IU menopur is a good combination, I’m not sure why this wasn’t considered from the start. Had I not happened to have a box in my fridge and asked the consultant if I could use it, we wouldn’t have tried it at all.

I did a bit of a dive in the last couple of days into the combo, most of the studies I found are IUI. But the findings are still relevant.

I found this one atm.amegroups.com/article/view/32800/html

Live birth rates were
7.0% natural
9.0% letrozole
14.0% letrozole + menopur

Lining thickness
7.3±1.6 mm letrozole
8.8±2.1 mm letrozole + menopur

With a statistically significant improvement in lining thickness and live birth rates when menopur was included, the study authors said it wasn’t added in at any specific point in the cycles, so hopefully the small amount I’ve had has done some good.

@2021ivfagain did the appointment go well, immune stuff is so complicated. Do you know what you will have in your regime?

@Enfys23 have you had the hysteroscopy yet?

@Gardenlady543 It’s all complicated with high and low nk cells, Alice negative but Emma revealed ultra low biomass microbiome so taking vaginal probiotics until transfer. Transfer is likely to be end of January. Problem is sourcing the probiotics. Physioflor is out is stock unless you live in Ireland, Italy or Spain, for example. I have canesflor and some physioflor left. Ordered gynolacta vaginal tablets from eBay and Lakcid intima from Amazon but wanted to get flora femme. Flora femme is good but where do you get it from? Thanks

@2021ivfagain you should be able to order from their website https://florafemme.com/florafemmestore.html/single-bottle-6-capsules. It comes from USA, my shipping experience was variable which is the fault of FEDEX, it's worth ordering a few, I would get 4 boxes when I ordered and using them at the most important times in your treatment.

The vagibiom from eBay is a good one too, also from USA.

I think I saw a 2 pack of the physioflor vaginal capsules available, not ideal to only get 2 but looks like you get 10 to the power of 9 vs 10 to the power of 8 that comes in the 7 pack.

@Gardenlady543

Did you get vagibiom from eBay? I’m worried Flora Femme will take too long to arrive.

@Gardenlady543 Which is better? Flora Femme or vagibiom? I have read that some people have side effects from vagibiom. Problem is it’s so hard to get lots of these probiotics. I’m taking oral probiotics as well and been on these for months.

@2021ivfagain they will both take a long time to arrive as they both come from USA, I just ordered vagibiom and it went through the international eBay thing and while it got to the USA discharge point pretty quickly it seemed to take a while to actually get to me, I ordered it November 9th it arrived November 21st. The best of the 2 is flora femme, but I personally like both. Personally I'd order both and use the ones you've got until they arrive.

@Gardenlady543 so pleased things have gone better and you're going ahead. I had a few cycles with lining anxiety and the good sonographers said it is better to take the measurement towards the end of the scan (or check follicles first) to give the uterus time to relax. So basically they said the same...it contracts and the first reading is often smaller. Have everything crossed for you xxx

@Gardenlady543 been keeping an eye on the thread and your progress and so pleased the cycle is going ahead. Wishing you all the very best for Wednesday 🤞🏻

I’m pleased things are looking possible for a transfer @Gardenlady543 you’ve been through the mill this cycle already. And well done for getting them to agree to using the menopur seems it’s made all the difference. I can really empathise with thin lining pain! That’s good your nurse tried to get the reading a number of times.

Sorry been quiet and not kept up. House move/solicitor stuff been bonkers and NHS winter means work also crazy busy.

I’ve just had my hysteroscopy this morning. It was my usual consultant doing it. He said everything looks good, and that the lining “furrows” as it should. The lining thickness on scan wasn’t useful as I’m due my period any day now. He is keen to see what my lining is like in a natural cycle so I’m booked in for a scan in a couple of weeks to see where I get to without meds, with the thinking being perhaps meds are messing me about. Then we can work from there, maybe even do another biopsy in the next cycle. He wasn’t overly fussed with repeating ERA though, says evidence isn’t great now but that if we do mock cycle to get lining right we can always just do one if we’re there anyway. Otherwise if natural cycle no good, suggesting 2mg three times a day estradiol orally, 2mg three times a day vaginally, and 200mcg patch, plus oral sildenafil as medicated option, and actually checking my blood estradiol this time. They prefer to try this first before looking at mild stimulation etc especially as my ovaries don’t keep up and I needed supplement oestrogen in my fresh cycle to get my lining to reasonable level.

@Gardenlady543 Thanks for your advice. It’s all costing a lot of money!

I’ve decided to take canesbalance again for 7 days as a precaution before taking more vaginal probiotics. Is it possible to take canesbalance at night and vaginal probiotics in the morning or is that had at too much?