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 :)

Thanks @Gardenlady543 what the normal vaginal ph should be?

@Gardenlady543 Do you know if I can take NAC during low dose stims? I’ve been advised to take it as it breaks down biofilms but I would have to stop it when I start blood thinners. Do you know if digestive enzymes interact with hrt?

@Mybabydream ideally under 4.5, under 5 is ok.

@2021ivfagain I don't know anything about NAC.

Thank you @Gardenlady543 for your detailed responses. The support groups recommended have been very useful too.
Can I ask out of curiosity why it’s important to treat the microbiome pre hydrosalpinx/endo surgery? I have my MRI this Thursday so imagine surgery will follow 6-8 weeks later.

@2021ivfagain thanks for your message. I don’t think I have candida but the antifungal is recommended whilst taking antibiotics so I guess I could take your suggestion or the clotrimazole. May ask GP for this on prescription.

@Gardenlady543 I was also wondering if you are able to share the cost breakdown of surrogacy and how this could fluctuate depending on the surrogate. If the transfer fails for example, do expense stop at that point? I guess I’m wondering how much expenses are really involved outside of the transfer side of things! Seriously considering this option alongside potentially trying naturally depending on what Dr Gorgy says tomorrow. Not sure if trying naturally is even possible with full dqa match.

Finally, what is the go-to vaginal probiotic ladies? I know this must have been mentioned so many times but I am drowning! I take optional orally but clearly not sufficient given my results. Wonder if I should switch or would they just have been even worse without 😩🙈

@2021ivfagain can I ask which garlic tablets you recommend? Been reading up following your message and I think these would be good for both balancing my microbiome and endometriosis inflammation. Thanks 😊

Hi everyone,
so I had my 2nd FET on Tuesday. I was feeling super positive about for the first two days because I could feel a little burrowing sensation in my right low down. Then I woke up feeling super low and could no longer really feel any cramps. These last few days I’ve just been feeling so up and down (also working away and have been doing a little more walking then I would really have like to have been doing). For FET 1 I knew within days that it was going to be negative- i don’t know how really but i guess bcos I had been pregnant twice before (both ended in CP) I knew what symptoms to expect because the other two were identical (sore swollen boobs and lightning bolt belly button pain).
im also not getting those symptoms this time either. Im not really sure what I’m looking / hoping for by messaging…
has anyone been pregnant and the symptoms be different each time? If this FET fails then I’m really at a loss because we’ve done ERA EMMA AND ALICE and the probiotics have hopefully helped the low lactobacillus. Everything else came back normal. Just don’t understand why perfect (all been tested) embryos are failing.
I know it’s still too early to know if it’s negative or positive but if honest with myself I think it’s not feeling good.

thank you. Sending so much love to you all- this is such an insanely hard part of our life !!!

@ChickenT2b

I mean I don't think it matters when it's treated really. But if it's abnormal you don't really want surgery moving bacteria around. If the vaginal microbiome is abnormal then it will be introduced into the vagina with the surgical equipment.

Vaginal probiotics:
canesflor is the easiest to get in the Uk
gynolact seems a bit better and is from Germany
Florafemme, 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.
florafemme.com

Vagibiom, 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. I prefer not to use this close to or after a transfer though as I feel it’s better to avoid adjusting the pH at this time as it varies throughout pregnancy. It’s a good one to use at the start of a cycle after the bleed has ended though. You can get it from eBay, it's also from USA.

So if you are in the UK, only altruistic surrogacy is legal, that means you can only pay expenses. You would ideally need a friend or family member to agree to carry for you. It is very difficult to find a stranger willing to do it. Most people go abroad, that used to be Ukraine but now most people have gone to Georgia. You are probably looking at about £50k for a package, and transfers probably around 3k a go if the first doesn't work. That is with embryos there, it's pretty hard to make them in the UK and move them because of the documents required. I'm with a difficult country, my package was £70k and as the two transfers included didn't work transfers are £6000 a go now. If it works you need to factor in being out of the country for 3-4 months to get the documents required to come back and then there is a legal process to get the parental order, all of that will have additional fees.

I would say you should give IVF a go first, a lot of people don't believe in the dqa1 match thing at all and I'm a full match and with immune treatment so far it seems to have worked.

Hi @Sar1010 what day post transfer are you now? It took me 2 untested and 4 euploid embryos, my first protocol after surgery for fibroids, with an immune profile and low dose stims was a chemical, the specialist concluded "not every euploid embryo is going to be a child", as far as I'm aware I'm almost 8 weeks with the one after. Having been on these boards for a while there are MANY people who swear they have no symptoms and it hasn't worked and then test and it has. Early on symptoms are incredibly variable. I didn't think it had worked and remember watching the second line appear in the frer when I took the first test at 6dp5dt, this is a good time to test with a frer. It's pretty conclusive by 6-7dp with a frer. I think I only really started getting symptoms after and I haven't got much, pretty much I just get sore breasts but only in the morning and I burp a lot, I haven't been sick at all. I'm on steroids and people say this suppresses symptoms.

@Gardenlady543 thank you.
Gosh I knew you were only able to pay expenses in the UK but I was under the impression there were agencies that would match you. Makes sense there’s not many strangers willing to do it, I wasn’t sure if loss of earnings was a potential way around paying for their time.
I have a friend who said she would do it, this was a while ago before we even thought we might need it so kind of hoping she might suggest 🤦🏻‍♀️ I don’t feel like it’s something I could ask of anyone and needs to be volunteered.

Yes you are my hope! How many weeks are you now? Do you have another scan booked in?

@ChickenT2b I mean I am probably not the best person to advise on the Uk process as I didn't look into it much before moving on. I think there are agencies but I am not sure of the legality, I think it's not possible for a third party to make money from a legal perspective. I've heard of an agency charging a large fee and helping to match but don't know if it's guaranteed that there will be a match. I know people join agencies at a cost to hear about events and the events involve potential surrogates and potential intended parents meeting at the event, but from what I've heard the events are mostly intended parents. The thought of going to an event to sell myself after everything I've been through was not something I wanted to do. I know a lot of altruistic surrogates want to help specific people for example homosexual couples and there are so many people that have been through trauma like losing their uterus and a child at the same time and I feel like I would be quite low down the list for someone to want to help. We did approach a family member before we embarked on surrogacy, she wasn't keen though which is fine, it's a huge ask and while it's going to be easiest if you know someone, they need to fully understand the process. Statistically the first transfer won't work unless someone is lucky and I think a surrogate not wanting to continue after a unsuccessful cycle would be really hard, especially because for me it would have involved moving embryos that then couldn't be used. I've been in this process since late 2021 now, it's certainly not easy or straight forward. If you friend has suggested it then you could open up by saying surrogacy is something that you are thinking of. I found it really hard to approach the family member but it was our only option for someone we know and we felt we should at least ask before the very complicated process abroad.

I am 7+5 today, scan is tomorrow which is scary as that's 10 days since the last scan and it's just a long time to go floating around hoping everything is ok.

Ergh so annoyed with myself! I went to the GP with my fertilysis results to get the antibiotic prescription (thought I’d try and save on costs). Ended up crying because I was made to feel so silly for getting these tests done. She commented how some of the words weren’t even in English (as if that invalidates the results 🧐) and she’d never even heard of some of the bacteria. I feel like such a cry baby and was told to ‘be careful’.
Anyway, ended up getting a 7 day 400mg course of metronidazole.
I bought the clotrimazole pessaries from the pharmacy and realised after they are 500mg not 100mg as you suggested @Gardenlady543 🤦🏻‍♀️ is this too strong? Should I maybe not take them daily?! 🤦🏻‍♀️
From your experience, what’s the reason behind taking the antibiotics for two weeks? The GP completely should down my request for this 🙈so didn’t think I could get away with suggesting two antibiotics simultaneously hence purchased the clindamycin online!
I think next time I won’t bother with the GP, the sense of humiliation is probably not worth the £10 saving!!

@Gardenlady543 best of luck for tomorrow’s scan. I have everything crossed for you. It must have been a very long 10 days.

@ChickenT2b very few fertility specialists get the uterine microbiome let alone gps. The test is valid, they detected bacteria RNA and advised what to do. Yes the lab is in Greece as so few places do this testing, that doesn't make it invalid. I'm sorry you had this experience, as I'm a doctor it's much easier for me in these situations, I mean what doctor is going to argue with another doctor about a test they know nothing about.

I would either get the 100mg pessaries that some online pharmacies stock, I ordered some at the same time as antibiotics and said I was advised to take them while on the antibiotics and they were fine with it. Or use canestan cream, you can get that from most supermarkets and pharmacies.

I went with 2 antibiotics for 2 weeks based on the bacteria I had, gardenella, it can be resistant but usually does well with longer courses and I had 0% lactobacillus twice so wanted to get it sorted once and for all. I find the Emma Alice lab usually says do 7 days and I mean I did that the first time and it did nothing. Fetilysis usually recommend 12-14 days in their treatment place I believe.

Thanks @Gardenlady543 im 6dpt today. Yes I’ve read lots about the no symptoms surprising people but I fear I’m not one of the lucky ones.
perhaps I should test soon then and see what happens- so scary!’

the best of luck with your scan tomorrow- let us know how you get on ❤️

Thinking of you today @Gardenlady543

@Gardenlady543 wishing you all the best for today ❤️

@Enfys23 so sorry you’ve been messed around by your clinic. The unnecessary delay would infuriate me. I hope they resolve it for you. I took DHEA for 12 weeks but it was only 25mg per day. My DHEA-S and testosterone levels didn’t increase very much. Recommend you get the levels checked if not already.

@ChickenT2b so sorry to hear about the shocking results. I hope it’s not as bad as it initially seemed. Have you tried IVF many times or yet to try as you needed your op? If you’ve not tried, it might be worth giving it a go first.
I also had to negotiate with my GP to get some antibiotics for microbiome. Its still not completely fixed but reluctant to go to GP again.

Good luck @Sar1010 . You really never know unless you test. Early symptoms, or lack of, are not reliable!

It’s a week until I have my review appt following my last cycle, and two weeks until I start down regging for next stim cycle. Still waiting for PGT-M results. Shortage of Synarel so I’ll have to use buserelin injections for down reg, which I was trying to avoid :-/ !!

Thanks guys, the scan went well, measured spot on at 7+6 and all looking good.

@Sar1010 I wanted to wait until 7dp5dt but decided to test 6dp5dt in the end and I think with a frer it should be possible by then if it's going to be.

Oh wow @CailinInUK it's all systems go, I hope your results come in soon.

Wonderful news @Gardenlady543 ! Is it sinking in yet, after all you’ve been through?

Thanks, yes all systems go. Race against time at my age!

Hi guys,

were there some people here dealing with high FSH? Maybe you @2021ivfagain ? I’ve a friend with FSH of 14 and I was wondering if there’s anything she can do to lower it!

Hope everyone is getting on ok. Delighted your scan went well @Gardenlady543

@CailinInUK I'm not sure as I went from someone with an awful prognosis and then the betas going up slower than they should, to suddenly having 2 good scans and things looking good. I just hope things carry on as I'm really feeling tired and having a lot of indigestion and it's taking so much out of me, it can't be for nothing! I feel like time is going so slowly, on my scan report it says the transfer was 5 weeks and 1 day ago, it feels like so much longer. I just want to sleep through things as much as possible right now. I have no idea how I did that day of treatment a few weeks ago for the ivig and lit, I definitely couldn't handle that now.

I’d say tiredness and indigestion are good signs @Gardenlady543 I was plagued with indigestion throughout and also started throwing up daily once I stopped the steroids so don’t be worried if you’re not getting morning sickness as the steroids etc can suppress it. I know though it is hard to believe after such a hard road.

@Gardenlady543 Congratulations. I’m really pleased for you.

I’m sorry I’m not always responding as quickly. Feeling very stressed at present. My mum and dad have care now in place but I feel really worn out with the constant worry when things go wrong. The current care company have been bullying our family since 2020. But also my mum has got so used to letting us do things that she doesn’t want to do things for herself to take the pressure off.

@CailinInUK I used buserelin for long protocol every time and it worked brilliantly but gave me a bad headache. I thought that was out of stock too. Good luck with it all.

@ChickenT2b I really recommend boulardii probiotic to prevent yeast infection when on antibiotics and beyond. It’s good for lots of things. I’m taking Allicillin 2 tablets a day by Design for Health. Also, what can really help is using either digestive enzymes or NAC to break down biofilm. It worked well for me last month. My problem is lack of oestrogen and norethisterone which raises ph but I’m reliant on it. Basically, you take oral probiotic 20 minutes before food then as you are about to eat you take the NAC or digestive enzyme. You can use them with antibiotics to really break down biofilm and help more of the oral probiotic work. I was having issues with oral probiotics not working. I used digestive enzymes and it improved.

@Dochas12111 14 is not that bad but it depends how old she is. My fsh got bad at 41 years old when it rose to 24. I’m 42 this weekend so it’s probably really bad now. What can work is wheatgrass 30g x2 a day, omega 3 high strength, dhea 25mg (get advice), ubiquinol 200mg x3 times a day, yoga and/or acupuncture.

@Gardenlady543 brilliant news 👏🏼 very happy for you. Hope you feel better soon but hopefully the symptoms provide some reassurance if nothing else.

Today I had my first consultation with Dr Gorgy. I was expecting a detailed report after and instead got a checklist of further tests I should have 🧐. No mention of the actual treatment we discussed (LIT for dqa match and neupogen for the KIR AA result, apparently I am missing two receptors whatever this means). I’ve emailed for more info on the treatment and next steps as not sure we want to do any further testing at present.
Happy to crack on with trying and/or ICSI after surgery but need to know what the medication will look like exactly.. 🤷🏻‍♀️

@CailinInUK thank you. I’m certainly feeling more hopeful again. We haven’t tried ivf yet as hydrosalpinx was found the week before! I’ve got my MRI on Thursday and surgery for both endo and tube removal should follow 6-8 weeks later.

@2021ivfagain thank you, I will take a look. Apologies, I hadn’t realised you had such a lot on or I wouldn’t have bothered you with the garlic question 😄. I hope things get easier.

@ChickenT2b this is standard for Dr Gorgy, when you go into the clinic for things like LIT, they will give you the file to take downstairs if you need to pay for something and you can take photos of the notes so you can see all the info. I asked for the treatment plan for my FET after my first appointment and got an email with it, so hopefully they'll send that through.

On my KIRS result the following 3 were highlighted 2DS1, 2DS5 and 3DS1 and it said "all 3 receptions are present" so you must be missing 2 of those which he must think are important. I know C-GSF (neupogen) is used for this.

So if you're having LIT for a full match I expect he will have you do 2 x donor pooled with your partner one of the donors to be in one session. I think they do it on a Tuesday and Thursday and they try to get the donor patients in. For those without a match they can have the treatment just from their partner. They will send LIT info over email before you have it. Your partner will need to have a full blood count and viral screen before they can be a donor for you. On the day your partner goes in I think at 8:30 they have their blood taken you then have to turn up in the afternoon I think from around 2:30/3 and it's first come first serve (expect a wait) and they will inject the pooled white blood cells into your forearms and cover with dressings. Did he say he will start you on hydroxychloroquine as well, he puts a lot of people on that as well as clexane, prednisolone and intralipids in FETS.

It's really good you're looking into everything early on. Did he advise about the microbiome at all?

@2021ivfagain sorry it's been stressful at home, it sounds like you've made some progress with your parents, it must be really stressful though.

Thanks @Dochas12111 :)

@Gardenlady543 good tip on the notes. I wonder if they will make me have all of the other suggested tests before providing treatment. They recommended PAIP, various thyroid testing, endometrial biopsy to check NK cells in the womb and karyotyping. I don’t think we need karyotyping at this point 🧐. Don’t particularly fancy the biopsy and my NK cells came back as normal, assume fertilysis don’t check within the womb in that case.
He also recommended to ask for hysteroscopy during my upcoming surgery so I will see what they say.
re microbiome he said I have zero lactobacilli but it doesn’t specifically say zero on my results. So suggested metronidazole and canesflor (complete two boxes followed by one capsule per week). I am following your advice on the microbiome treatment once it all arrives and requested a refund from fertilysis for the follow up.

On the LIT I have asked them to advise what the treatment would look like in both scenarios of trying naturally and ICSI. It’s likely we will give natural a go for at least a couple of cycles post surgery. He actually said that my endometriosis is my biggest problem at the moment so might as well try once it’s gone.

To think I started messaging in this group after one miscarriage and zero testing. I’ve certainly opened a can of worms now 🙈

@Gardenlady543 ah apologies, I meant to ask… why do you think he recommended IVIG and lit for you? He didn’t suggest IVIG for me and I’m not sure why. I’m not complaining as it’s so expensive but just curious why he wouldn’t have given we are both a full match. Do you have raised NK cells could that be why?