ERA EMMA ALICE testing thread 8

[Gardenlady543]

@2021ivfagain @kerrym87 @Janefx40 @seven201 @thislittlebird @Spin101 @Enfys23
@CailinInUK @BewilderedBee @Loz2467 @Lori2022 @VenusStarr @clhiu @Faithhopelove83 @APSR @ChickenT2b @Mina209 @IVF22 @Lizzybeth1988 @AM08 @Fluffykins33 @Sar1010

Continued in from thread 7 :)

@2021ivfagain No irritation or burning whatsoever. It felt fine.
The first time I ordered, they took longer than expected (perhaps 2-3 weeks) as they weren’t in stock and Spectrum had to wait for them to come from US. Their website had said they were in stock, which was annoying.
The second time was very quick (a few days) as they were really in stock. I checked my order and Delivery was £3.99.
I’d recommend emailing them to double check they’re in stock.

Do people use vag probiotics during stims or is this not recommended?

@Gardenlady543 this must be worrying. I hope you’re doing ok. The ups and downs are so heart wrenching.

@Gardenlady543 sorry you have stress with the tests. I would say that progression was pretty slow day to day with FRER but the cheapies didn't really show much at all if any. Hope it's just a blip. I know it's a worrying time either way. Sending love xxx

@Mybabydream I wrote about the microbiome here: www.reddit.com/r/infertility/comments/rwsxwy/theuterinemicrobiomeemmaalicemenstrualfluid/?utmsource=share&utmmedium=iosapp&utmname=iossmf&utmcontent=2&utm_term=15

You should use an acid product in addiction to the probiotic to help the lactobacillus adhere to the vaginal wall. I am in a FET now and using a vaginal probiotic every day.

For the best probiotics:

Canesflor is the easiest to get hold of in the Uk but I feel there are better ones.

Florafemme, this is the ultimate vagina probiotic, it has 72 billion bacteria in it and lots of different strains. It is expensive and you only get 6 in a packet so I would recommend doing it straight after the course of antibiotics and then do one packet before a transfer. You need to order it from USA.
florafemme.com

Vagibiom
This has Lactobacillus Crispatus in it which is felt to be a very good strain of lactobacillus, as well as some other strains. The benefit of this one is it has the acid and prebiotic (nutrient) built in. It is also from USA and you can order it from eBay.
www.ebay.co.uk/itm/Vaginal-Probiotic-Suppository-30-Natural-Vaginal-pH-Odor-Control-No-Parabens-/283702366882?mkcid=16&mkevt=1&_trksid=p2349624.m46890.l49286&mkrid=711-127632-2357-0

Gynolact, this one is good as it has 3 different strains in it
www.pharmasana.co.uk/gynolact-vaginaltabletten-8-st-03034436

Oral:
Bio.me.femme
www.supplementhub.co.uk/products/bio-me-femme-v-60-capsules

Optibac for women, you can get this from a lot of places, I've even seen it at tesco.

Femdophilus - there are 2 strengths I get the strongest. You can get from Amazon.

@2021ivfagain I'm kind of stuck with home urine testing, my OTD is Sunday and if I relied on betas I would only have a result from today and Thursday by the time I have to tell the clinic and that wouldn't tell me if anything happened in the days after. Plus I need to sort out with my reproductive immunologist what to do if it's positive so need an advance warning.

@CailinInUK I keep an eye on vaginal pH and would use an acid product and vaginal probiotic if it started going up, but really you can avoid them and just sort out any misbalance after the stim cycle is over.

Thanks @Janefx40 I hope you're right!

Anyone heard of prp? It's been suggested at time of egg retrieval but surely its better beforehand? When I said i don't have finances to keep tying time and time again with my eggs if they're crappy and could it be done at time of ema and Alice the said oh yeah could do. We're thinking of Dr gorgy in london as been suggested growth hormone and double hcg trigger to help with egg quality and its still cheaper traveling there. The clinic also felt if I moved to donor eggs I could be quite successful after i mentioned we were considering. We're still on fence whether to try again with my own eggs and what point we go to donor , need to total up and estimate to see what we can afford. Anyone got any experience in deciding what's best with limited finances as its so overwhelming deciding and then arranging it?
@Gardenlady543 hope things are better for you x

All good with me :)

@kerrym87 I looked into learning to give PRP in the past. I think I looked into it for my lining and couldn't find a place in the UK that does it, does Gorgy do it?

@Gardenlady543 yes they do . The prp is supposed to simulate stem cells to become follicular cells and improve current ones, in theory 'younger/better'. At 1800 though if its unsure if it will work is alot. Glad to hear things are going well, fingers crossed for you.

@kerrym87 if you can afford it it's worth a try. I think maybe discuss if it will help an show long it might help for. Like I did LIT at a cost of over £4000 but it lasts for 4-6 months, I didn't do IvIg before a transfer though as I felt that was a lot to change another no implantation result on. But would consider it now, Dr Gorgy said he would likely me to want IvIg with a good beta.

@Gardenlady543 Very glad to hear things are going well for you. What are the next steps? Would you mind me asking what were the key changes between this and your previous transfer, particularly in relation to immune protocol? I know you mentioned hypothyroidism in the past. Did any of Dr Gorgy auto-immune investigations found any specific factors? I have an appointment booked with Dr Shehata’s clinic in Epsom in two weeks, looking forward to at least getting a second opinion if nothing else.

@kerrym87 I’d never heard of PRP before, but I am now very intrigued. Anything that promises to improve egg quality for me would be absolutely key. Let me know if you decided to go ahead with it. In the book I just read that a few of you recommended there’s a couple of references to how some immune treatment appear to also improve egg quality so I’m especially drawn to this aspect of reproductive immunology if true.

@Gardenlady543 @all do you think that the fertilysis test give any more info then the emma alice? Thanks

@Gardenlady543 Is your beta blood test tomorrow? Good luck but it sounds like you’re doing well.

I’m still waiting for my results. I hate wasting time but have to do my transfer next month. Could I just ask if you stopped your vaginal probiotics 2 days before so Friday or Saturday if it was a Monday say? Then you restarted 2 days after transfer?

@2021ivfagain I did a beta at 8dp5dt and it was 94.2, I repeated 48 hours later at 10dp5dt and got the result just now as 152.

So doubling time 69.4 hours
Percentage increase in 48 hours of 61.5%, is this ok?

People say that it doubles over 48-72 hours. I last did a urine test on 9dp5dt and did another this morning on 12dp5dt and it was a dye stealer. I was going to repeat my beta hcg again on Monday which is 14dp5dt.

@Mybabydream not really but it's cheaper, quicker and less invasive and if you pay for the consultation after your treatment plan will be more in-depth.

@clhiu I'll write out what I did differently in a bit :)

Thanks i actually did do emma alice while awaiting fertilysis consultation which i had couple of days ago . The Dr on the call suggested to have it on top but i wasnt sure , so good to know no need to do fertilysis ontop. Tks

@clhiu

So this is what’s happened with me:

I have had 6 transfers- 2 untested and 4 euploid and never had a positive pregnancy test when trying.

First I had the microbiome issue, then transfers kept not working, I had a fibroid all along that was felt not to cause an issue, but developed one that would, so both were removed and I was told both were submucosal and would have effected implantation.

I had been doing medicated cycles but they didn't work for me, the estradiol made me feel ill, one time the level was 8000 (it's felt I developed an autoimmune thyroiditis due to this) and my lining got to an ok thickness and was trilaminar but described as patchy.

We decided to move to a natural modified cycle instead. In December I did letrozole 5mg cd2-6, and then they added fyremadel, an antagonist, everything stopped. I did a couple of doses of menopur 75 units and things restarted and had a trigger implanted, but it was a chemical.

Then I had a delay as I had an abnormality on a saline scan and needed a hsg. We thought we got the formula right so the plan was to replicate the cycle but with menopur in from an earlier point, I started letrozole, things looked good at the first scan, lh was starting to rise and the doctor started fyremadel antagonist to stop me ovulating and sent me off telling me to do the menopur 75units, the next few scans everything stopped, they tried increasing the dose of menopur but my body has stopped, the follicles went and lining was 3mm.

The doctor started me on oral contraceptive pill for 2 weeks, with the plan was to start with the bleed but there was the big follicle so I triggered and waited another 2 weeks for a bleed. We had decided to remove letrozole completely and do low dose stims from CD2. Menopur is no longer available in the Uk so we used Meriofert instead.

In the time off I took 5 days of metronidazole, I do this the cycle before because I am prone to BV.

I got the bleed and have a baseline scan at cd1 there is a corpus luteum still but I’m given the all clear to start

Protocol was:
I'd previously been found to have high NK cells in the blood and a complete hla dqa1 match with my husband so had LIT X4.

Long term meds:
Hydroxychloroquine 200mg twice a day
Low dose naltrexone 4.5mg

Cycle meds:
Meriofert 75units from CD2
Inhixa 40mg from CD8
Prednisolone 25mg from CD8

Intralipids some time between CD7-11

I have trouble sleeping in cycles and use Diphenhydramine 50mg to help (also used in at home immune protocols)

First scan at CD8, follicles looking good, told to carry on over the weekend and they agreed I could stay off a fyremadel antagonist with LH sticks over the weekend. The antagonist shuts down my body and also people say it effects receptivity.

Back in for a scan after the weekend and things look good, I think I had a follicle of 20mm, estradiol 1500 and lining 8.75mm. Triggered that night gonsai 5000 units.

Progesterone started 2 days later:
PIO once a day
Cyclogest 400mg twice a day (first day I did one and then added another in from second day)

Doxycycline 100mg twice a day for 3 days from 2 days before transfer

A daily vaginal probiotic everyday from before the bleed throughout the cycle except not the night before or night of transfer.

Other things I did which are random but why not:
Acupuncture including daily moxibustion stick until day before transfer. They put stress relieving spikes in my ear and did a session pre and post transfer.

Frozen pineapple core from 4 days before until 4 days after transfer.

Always wearing 2 pairs of socks including one fluffy one

Little to no movement the week of the transfer, I was off work and laid on the sofa doing Lego and crafts.

I think in my case the things that made the difference were the fibroid surgery, LIT and immune treatment, since that led to my first positive (chemical) and then a positive in this cycle. I'm just worried in case this treatment has only helped me get over the first hurdle.

Wow thank you so so much @Gardenlady543 for such a detailed thorough explanation of your history, I know it must be a stressful time for you so I especially appreciate you taking the time. I hope things continue in the right direction for you and this is the right one.
The book and your story are giving me a lot of hope and ideas of other things to look at and that it doesn’t have to be over for me yet. X

@2021ivfagain oh I forgot to answer, daily vaginal probiotics except night before and night of transfer.

@clhiu thanks, I so hope this is it for me, it would be so hard for me to come this far and for things to not work. I was so reassured with the urine test lines and the first beta.

@Gardenlady543 It all sounds positive. When I got pregnant in lockdown, I did not have beta and only my home tests due to not wanting me to travel unnecessarily. I had to wait until week 6 for a scan! I think the positive tests that are really strong are an excellent sign.

So you restarted one day after transfer. Did you do that last time? As I might have to take vaginal clindamycin which will wipe everything out and raise ph, I’m thinking of restarting my vaginal probiotic 2 days after transfer as consultant said 4-5 days after transfer but that would mean I’d be without probiotics for 6 nights. I think my consultant doesn’t know enough about them and thinks they might impede implantation but you have proven otherwise.

@2021ivfagain last time when I had the chemical I stopped I think about 2 days before transfer and then didn't restart, but then I ended up with a high pH and freaking out. So this time I just had those two nights without the vaginal probiotic. I am using ones without acid in them around the time of transfer and after though. As I know pregnancy hormone changes mean the pH is variable and thought I didn't want to mess with that. So I have been using flora femme and currently I'm using an old pack of physioflor I still have.

@Gardenlady543 That sounds sensible. Are you still using gynolact? I don’t have physioflor left. I’m planning on using Flora femme after transfer. Would you use canesflor?

Currently, I’m using lakcid intima which are better than canesflor but have similar ingredients. They do say, however, not to take if pregnant but could take if breastfeeding. So I will take lakcid intima this month as they have two live good strains: lactobacillus gasseri and lactobacillus rhamnosus. They work much better than canesflor and have really helped. I will stop these when I start my treatment but that won’t be until mid June.

I am still waiting for swab. Due to the timing, I will need to order vaginal clindamycin from
an online chemist as my IVF consultant refuses to help me. I will be going to online Boots or Superdrug. Do you know if Dalacin Cream 2% is what you used for vaginal clindamycin?

@2021ivfagain yep dalacin is the one I used, I got it from the independent pharmacy. I have used gynolact pre transfer, just physioflor and flora femme after, but that's just the way I picked up the packets, I think gynolact is fine to use, canesflor too. There is just an order of which are better in my opinion, but that's more important when recolonizes vs maintenance.

Hi all, just catching up here.
@Gardenlady543 tentative congratulations, I so hope this works out for you and have everything crossed.

On my side, it’s a race against time to start treatment this month. Long story short, my Dad was due to pay for our multi cycle care package - he’s pulled out of this. So we have applied for a loan this morning to finance it ourselves which was a totally unexpected change in events.
Period due 27th May. Just hope we manage to get the funds in time to start, I feel totally rushed now but you know when you had a plan and are mentally prepared for something..!

Also awaiting fertilysis RPL results (microbiome & immune) which are due around the same time as my period.

Probably being impatient pushing to start this month all things considered but 🤷🏻‍♀️ 🤦🏻‍♀️ 😕

Hi all,

Hope you don't mind me joining this tread, I'm looking at potentially doing ERA / EMMA / ALICE following our 4th unsuccessful transfer and have found these threads so helpful. I'm currently going through the treads but theres a lot to go through so sorry if I ask any questions in the meantime that have already been covered.

Some background: I'm (soon to be) 38, DH is 39. We've been ttc #1 for almost 8 years now and had no previous indication that we would have issues. DH did have mumps when he was younger but this doesn't seem to have affected anything.

We had our one and only natural pregnancy in Oct 16, it ended at about 6 weeks but I don't think my hcg really got going as we only ever going positives on FRER but no other tests. Since then we have had a fresh in Dec 2018 that ended in a chemical, FET #2 in Sept 19 and #3 in Oct 20 that were both BFN and our most recent Fresh transfer that was BFN although I did get a faint line 8dp5dt.

I have high anti thyroid antibodies, but because my TSH isn't high I'm not on anything for that. My NK cells CD69 are high too as are my TH1:TH2 cytokines. I was on 25mg prednisolone and had an intralipid the day before transfer for this round at the Lister. DH had sperm DNA fragmentation and that did come back a little high so was recommended to take proxeed.

My AMH is 23 so decent for my age, and we seem to do well in getting blasts (3 first round, 4 this time) so I feel like something that's happening at implantation stage - hence looking at the ERA / EMMA / ALICE tests.

We have our follow up on 21st June, were still NHS at the moment and are lucky enough to get three rounds with them but we so have challenges in getting them to accept any private test results. I'm not sure how they would feel about the ERA test so don't want to commit to that if they aren't interested, but tempted to start with the Fertilysis Infection and Microbiome tests in the meantime - I know a few of you have done these so just wondering if you would recommend or if its worth holding off for ERA / EMMA / ALICE?

Sorry for the long message - there's a lot of context to give after 8 years!

Thankyou @ChickenT2b :) I'm so sorry to hear about the financial issues, that must be incredibly stressful when you already have stress to deal with. Are you sure going for a refund package or a cycle package, I did the 2 cycle package which was about £7300 and I really got my moneys worth! It has probably gone up since.

@StillWishingHoping welcome, I'm so impressed when people have managed to read any of these threads, as there is just so many messages.

You have probably seen me saying the same thing already, but here are my opinions.

My opinion on ERA has changed over time. In 2021 I did a medicated mock FET after 2 transfers were unsuccessful, on a background of never having a positive pregnancy test. It came back and said to add an extra 24 hours of progesterone and no need to repeat as most people are in range at the new timing who had a similar result to me. I did a transfer, no implantation. So I was repeating my EMMA ALICE after this and so I repeated the ERA at the new timing and it came back to say still early receptive and add another 12 hours. So I did another euploid transfer at this even longer timing, still no implantation. So I ended up needing fibroid surgery and when I was ready for more transfers me and my specialist decided we would move onto modified natural cycles and we would ignore the ERA timing and stick to the standard timing. The first implanted but was a chemical, the next implanted and I'm 14dp5dt and testing positive.

There is emerging evidence about the ERA, so this abstract published:
[[https://www.fertstert.org/action/showPdf?pii=S0015-0282%2821%2900882-7
www.fertstert.org/action/showPdf?pii=S0015-0282%2821%2900882-7]]

Both the study group and the control group had an ERA, the study group followed the ERA advice, the control group ignored the ERA and did the transfer at 123 hours +/-3 hours. Recurrent implantation failure and recurrent miscarriages were excluded, but it’s interesting to see what happens when the ERA result is ignored:

Limiting the analysis to those for whom ERA recommended a change in transfer timing of at least 12 hours (only Pre- and Post-receptive results, excluding Early and Late receptive; N=243), 63.3% of Control and 54.5% of Study subjects had an ongoing pregnancy (RR 0.86; CI 0.62-1.19; p=0.20).

So there was no difference between the group that had a receptive window and those who didn’t (but the result was ignored and the transfer was at the normal timing).

I also know someone whose specialist does the transfer a day early in everyone as they think they get better results and when they do the ERA a day early most people come back as prereceptive but it still works at that timing.

Re the microbiome, I wrote about this here. https://www.reddit.com/r/infertility/comments/rwsxwy/theuterineemicrobiomeemmaaliceemenstrualfluid/?utmmsource=share&utmmedium=iossapp&utmname=iossmf&utmmcontent=2&utmterm=15
Happy to expand on anything. Essentially you can test via fertilysis menstrual fluid microbiome testing without doing the EMMA ALICE which is cheaper and less invasive. You could also have a look at your vaginal microbiome as a starting point.

A couple of FB groups worth joining:
Infertility and Repeated Implantation Failure (RIF) support
Reproductive immunology support
and there is a Uk RI group you'll find info about that on the international one.

Well done for going down the reproductive immunology group, I don't know much about the Lister, is it worth seeing someone like Dr Gorgy. He put me on a immune protocol. Dr Gorgy will see people and advise and prescribe add ons, so you could follow his plan while at your clinic. I also did a second opinion through www.centerforhumanreprod.com/contents/services/second-opinions/second-opinion-program which was interesting, you need to send across your info and test results etc and they provided a report on what to look for next. It cost $350.

I developed a thyroid problem during IVF, it's felt to be an autoimmune thyroiditis, I take levothyroxine and a few months ago I started on low dose naltrexone. I got the LDN though here: dicksonchemist.co.uk/new/ldn-page/ I booked a consultation for £50 and sent proof of my diagnosis of hypothyroidism and my prescription and a prescriber authoritied it and they gave me 3 months supply, it is about £30 a month and they told me to titrate up the dose to 4.5mg per day. It's supposed to be good for people with autoantibodies.

There are FB groups:
Using LDN to conceive / prevent miscarriages
Low dose naltrexone (LDN) and hashimotos

If the prescriber can't prescribe it, you can go through www.burghwoodclinic.co.uk/ who could sort it out, also Dr Gorgy said he would write me a prescription. It's worth looking into.

I hope this is is helpful and gives you some things to explore.

I had consultation with Dr Anu at fertility academy....she felt my issue was more egg quality not immune and when Dr gorgy offered me the PRP that was toikorove egg quality. Looking at what we hope to do which is one more cycle with my eggs (physically I can't manage many more) then donor it's so much money. I don't know what investigations we should get, will we regret spending lots of money doing lots of things that may not be of much use, what if we regret not doing things. If we want a quick result with more chance of it working donor could be way forward, its all a melting pot as we have some money but not unlimited. Anyone got any advice how to navigate the sheer amount of what is on offer, the amount? If we did all that we wanted with fertility academy investiagtions, one cycle own eggs, then donor with only 1 FET it would be £26k without drugs.....there are some clinics closer who do packages but hard to know if they will do enough.

@Gardenlady543 is your most recent cycle part of the package too or did you have to start again?
We’re doing the 3 cycle refund program with Care which includes unlimited transfers, it does cost £15,000 plus medication. But one cycle and one transfer alone was coming out at about £7-8k I believe so potential for huge savings should multiple transfers and cycles be required.

@kerrym87 I said after my fibroid surgery, I would do 3 euploid transfers with a full immune protocol, and it has cost a lot.. I decided to do 2 x LIT at more than £1k a time and 70% of people respond to this, but I didn't respond and it just kind of spiraled, eg I felt I needed another 2 LIT as I felt I needed to see it through. I think the best option is to set boundaries. I feel it's important for people to feel they did enough to feel they tried to their boundaries, and boundaries vary, people I know didn't do IVF at all, I'm at the other end, my psychologist said most people would have stopped long before the stage I'm at.

Could you do the collection cycle with the PRP and then move to donor eggs if that doesn't work? Would that cost a lot? The point to move to donor eggs is very personal and different for everyone.