ERA EMMA ALICE testing thread 10

[Gardenlady543]

Last thread is maxed out... happy for anyone new to join to chat about anything ERA EMMA ALICE or pretty much anything else fertility investigations and treatment related

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Loz2467 @Mybabydream @ChickenT2b @kerrym87 @Sar1010 @thislittlebird @APSR @VenusStarr
@Dochas12111 @SallyLovelady @Lyrabee @Lauralozzle @Sera9 @Twigg12 @Wren123 @Summerishere83 @Vicky81B

@Dochas12111 and anyone else who has time to read this and help!

tbh I'm a bit confused. I do have some bad bacteria but not bv and The Alice and high vaginal swab showed nothing bad. But I have done 4 invivo tests and they show stuff up. The first time was September and I shared it with ivf Consultant who told me to wait see if they go by themselves because there was no bv. They didn't all go so when I retested in December and they were still there I asked for antibiotics. Took doxycycline and metronidazole. I retested in March and still showed I had prevotel bivia, enterococous faecaelis and streptococcus agalactiae though the numbers were improved/better and for the first time showed presence of vaginal lactobacillus crispatus. That's when I thought it was the right time to do emma and alice. alice was good but emma showed no endometrial lactobacillus at all. I repeated invivo in June, a couple of weeks before the repeat emma test (which I am waiting results for next week) and now it shows no vaginal lactobacillus at all, still shows prevotella bivia, enterococous faecaelis (this one has reduced to low level), the strep seems to have gone by itself but the ureaplasma is back again!

I really don't know where to go from here.
I follow all the advice: no baths, no pools, saunas, no unprotected sex, wash vagina only with water etc etc, I use two vaginal probiotics per day (probiofem from France and vagibiom from usa) and also a daily oral probiotic called femex forte.

When things got better in vagina and there was lactobacillus there, I had started using invivo via vagina for a short time. But igenomix who create the emma and alice tests told me the reason I might not be getting lactobacillis in the endometrium is because I need to use probiotocs that contain only 100 % lactobacillus and not other strains. Because invivo contains a bifidobacterium and not just lactobacillus, I stopped using it. And now things have deteriorated in vagina again. Were igenomix wrong!
Though ultimately I need the lactobacillus in the endometrium, not just the vagina.

I really don't know what to do differently or how long to keep going for.
I have used probiotics vaginally for 9 months now.
Trying to fix the environment for my last fet.

@Prayformiracles I am really sorry you’re going through this. 2 years ago after a lot of egg collections I was put on a lot of antibiotics and it messed up my microbiome. The oral ones destroyed my stomach and caused ibs. I kept getting bv and didn’t have sex with my husband for a year whilst I was sorting this out but still kept getting it plus enterrocus faecalis. Enterococcus faecalis I had just before my successful transfer last year. It can be transient. I took very strong garlic tablets called Design for Health which are a natural antibiotic. I took two a day. I also took oral probiotics but they can not be good if you have stomach issues. I also used balance activ twice a day with a vaginal probiotic like canesflor. You can use Vagibiom instead of balance activ but I used an acid product twice a day. I did this before my transfer. Stopped on my transfe day. Then I used flora femme and Vagibiom. When I got to 10 days after transfer my ph was still high so I took balance activ with a vaginal probiotic in morning and Vagibiom at night. It did work for me but I have never stopped vaginal probiotics with balance activ and Vagibiom. I will be on this for the rest of my life.

I would ask as well about vaginal metronidazole. I did find vaginal clindamycin better but I took so many antibiotics I had to keep taking more. I believe that continual vaginal probiotics are better in long term with balance activ twice a day. It restores microbiome completely by stopping the bad bacteria and replenishing with the good.

So now I take two garlic tablets a day plus a lot of other supplements, balance activ with vaginal probiotic in evening and Vagibiom in morning. Sometimes I use balance activ twice a day with different vaginal probiotics. Look for probiotics with high strains. Flora Femme is good but very expensive. Canesflor has sold out. Vagibiom you can get from EBay and sometimes Amazon.

@Prayformiracles I see you use Vagibiom. I would use it once a day with balance activ gel plus vaginal probiotic every night. You could even use Vagibiom twice a day. Sometimes I have used Vagibiom twice a day then balance activ plus vaginal probiotic in evening but I’m on norethisterone which messes up ph so I have to be on top of it all the time. Have you tested your ph? You can order Normogin vaginally but it only comes in bottles of 6 so you would need to order more. It contains rhamnosus. You would use balance activ with this. When are you doing FET? My last FET was cancelled as my oestrogen was very high and lining got too thick.

@2021ivfagain thank you for your reply. Did someone recommend you the garlic supplements? I have just registered with a nutritionist who has requested lots of blood tests and will consult with her next week.

I thought vagibiom contains the lactic acid found in balance activ so I stopped using balance activ?

Vagibiom is a vaginal probiotic is it not? Got a bit confused as in your message sounded like it wasn't but may have just misread, sorry.

So I'm using probiofem vaginal probiotoc morning and using vagibiom vaginal probiotoc before bed. Do you suggest adding balance activ at the same time as using each of these daily?

I don't mind paying for florafemme as its last chance but igenomix told me they would not recommend it as it is not 100% lactobacillus. Did you/others use it for your successful cycle? How often?

I also tried gynolact and gynophilus but they kept falling out after a few hours so I stopped those. I haven't heard of Normogin but I am taking femex forte orally which contains rhamnosus and reuteri.

My ph was high when I tested it with the most recent invivo test. Do I need antibiotics or just persistence with probiotics? After 9 months of various vaginal probiotocs (albeit the first 6 of 9 months was just canesflor) , is it likely that my body just isn't ever going to respond to probiotics or do I keep persisting and for how long?

@Prayformiracles Yes Invivo nutritionist. They recommended two tablets a day of Design for Health. They are strong.

Ok. Are you using Balance activ gel with these vaginal probiotics? I found when I was using them alone nothing much was happening. You use them together. The acid product balance activ gel restores microbiome and limits bad bacteria in. Then it allows the probiotic to work. Think of balance activ like a prebiotic. The Vagibiom already has acid product (prebiotic) in it as well as probiotic. However, they are natural and I found I either needed two a day or one in morning and one different vaginal probiotic with balance activ at night every day without fail.

Gynolact is not very high in probiotics but it could still work. You need to look at the amount of lactobacillus in each probiotic.

@2021ivfagain I haven't been using balance activ with these. I will def do that from now on then. Do you insert the vaginal probiotic then use the balance activ straight after?
I am no longer using gynolact or gynophilus.
I am using probiofem but that doesn't have alot in. And vagibiom.
Which others did you use with vagibiom?
Did you do all this and then retest emma again? How long did it take before it made a difference?
Perhaps I can ask the nutritionist about garlic supplements too. I think I heard these take at least 3 months to make a difference?
I just did era so thought I'd be starting my real fet next month but I think I need to hold off again. I just hope I start seeing some improvements. Do you know if I need antibiotics roo based on what's showing in invivo results or just get sorted with probiotics. I might also ignore igenomix and go back to using invivo vaginally as well.

@2021ivfagain also can I just check you don't use any of this stuff during spotting/bleeding? I'm about to get a period.

@Prayformiracles I use the vaginal probiotic first of all. Then the balance activ gel. Gel is better; pessaries not so good. It lowers ph so that bad bacteria cannot survive.

You could still take antibiotics as well and get advice on that, but I found clindamycin best one. However, that did make me vulnerable to gardnerella. So when I did my transfer and got pregnant I kept using vaginal probiotics and it helped so much. When I stopped in the cycle of taking antibiotics and then using probiotics, things improved but you have to get advice. I would say maintenance with vaginal probiotics plus balance activ twice a day or Vagibiom plus balance activ + probiotic is best. So morning and evening. It might seem excessive but when I was just using once a day I kept getting gardnerella back.

@Prayformiracles When it was really bad, I still kept up the balance activ during period and it was fine but once a day. Now I am able to stop for the first 3 days but then start again on day 4. On day 4, my period is light so I just use vaginal probiotic plus balance activ before I go to bed.

@Prayformiracles Design for Health garlic tablet you take 2 day but must stop before stims and before blood thinners.

You can be on these for months. It’s also a bit like taking norethisterone but it’s a natural antibiotic. Also good for colds and inflammation.

@Prayformiracles Not norethisterone. Sorry garlic tablets are like metronidazole in terms of it helping a lot of bacterial infections. Problem is I had a really bad gardnerella issue which did not resolve with just antibiotics. Long-term probiotics and balance activ have sorted it out but due to taking clindamycin and fear of getting worse again I have to stay on these probiotic and balance activ gel. It costs a fortune.

@Prayformiracles vagibiom is best one but it’s not enough to just use this. You could still use gynolact as well but use with balance activ and then vagibiom at night or vice versa. You need twice a day probably if ph is raised.

Find out about antibiotics. I just found oral ones hard on stomach and also caused dryness vaginally. I thought I was suffering from vaginal atrophy and went to GP. I later found out the constant antibiotics caused extreme dryness vaginally. Vagibiom is good for that. Now I am better but saving up for FET.

@2021ivfagain I don't suffer with gardnerella or bv so wouldn't want to use any antibiotics that might cause it like that happened for you.
I will carry on with vagibiom plus balance activ gel evenings. Plus probiofem or invivo vaginally plus balance activ again in mornings.
May consider garlic but will wait to speak to nutritionist. Also read it makes people stink in their pores not just their breath. Thank you.
I need things to speed up as we are reaching the end of our psychological patience.

@Prayformiracles You don’t need balance activ with Vagibiom as Vagibiom already has acid product in it and a prebiotic. The only reason you use balance activ with the other vaginal probiotics is because they are missing the acid product. It’s the acid product which helps the probiotics stick to the vaginal wall. I would say flora femme is good but expensive. Vaginal probiotics with rhamnosus are good and crispatus, gasseri and acidophilus.

Well you might need an antibiotic to clear what you have. Antibiotic is more immediate to get rid of bacteria quickly but then you need to do a lot of work to replenish what has been lost. However, you might need to use an antibiotic. If you are not in a rush to do the FET, you could just focus on using balance activ with vaginal probiotics in morning and Vagibiom in evening for a couple of months, then retest.

So I take Vagibiom in morning on its own then balance activ with vaginal probiotic in evening. I put vaginal probiotic in first then I use balance activ. Obviously, due to bacteria, I wash hands before the vaginal probiotic and then before I use the balance activ.

@2021ivfagain oh right I see, thanks for clarifying about not needing balance activ with vagibiom probiotic.
We are in a hurry cos of the impact the delays are having on us but on the other hand we are not going to just stick it back in and waste it whilst things aren't good in endometrium. Don't mind putting in loads of work with probiotics etc but I bet even using antibiotics will cause further delays in replenishing lactobacillus.. though as its currently non-existent then I suppose it doesn't really matter if I use antibiotics.
Thanks again.

@Prayformiracles I have just looked at your post again. I have just researched ureaplasma as I have not heard of it before and you will need antibiotics for this.

Prevotella might be connected to BV but it is very common. Enterrocus faecalis I had due to ibs but it often clears up on its own. My enterrocus faecalis did with allicillin garlic tablets Design for Health 2 a day from Amazon or Natural Dispensary.

@2021ivfagain I don't know if my Consultant is going to advise antibiotics. After the first invivo report he told me to wait and see if the pathogens go away naturally. When they didn't at the second invivo report he prescribed antibiotics which got Rid of ureaplasma but not prevotella bivia. That was in December. I may have to decode what I want and just ask. I sent him My invivo results on Tuesday and I haven't heard back from him yet so I think he might be waiting for our upcoming consultation to reportback on emma results in about ten days time. But if invivo showed no vaginal lactobacillus then it's highly likely that emma will show none too. Prob no point delaying the antibiotics. Even if emma has improved (which is so unlikely) surely I still shouldn't do an fet with existing ureaplasma etc

Hello. Has anybody experienced redness and itching when using vaginal probiotics? I’m not sure if this is a natural reaction or I’m developing thrush? Many thanks

@Diamondpearl123 No. I have sometimes had bleeding near ovulation or just after period but no other reaction. What vaginal probiotic is it? Vagibiom is the most natural probiotic you can get. I know that boric acid can be a bad idea if it is in a probiotic and that can cause a reaction.

How are you @Dochas12111 ?
Hope you’re okay @2021ivfagain
@Diamondpearl123 I can’t use some vaginal progesterones as I instantly get bad reaction but then I am super sensitive (I have eczema).

just wondered if anyone has experience of ARGC, Dr Sami Almusawa or Plan your Baby? I was just looking at their service and he used to work at ARGC. Looks like they’d help support with meds etc and do same day bloods locally. Might help me get round the distance from London issue.

Hi @Enfys23 I hope you had a lovely relax on holiday. All ok here - scan this day next week so just trying to survive until then.

I haven’t used ARGC but I did do a consult with them. If you did go with them I think you’d have to basically move to London while you’re doing treatment as there are so many bloods and tests.

there is a thread here on ARGC which might be useful although it’s old enough now but could have reference to that consultant if he used to be there.

https://rollercoaster.ie/community/fertility-issues/irish-women-cycling-at-argc-2015-and-2016/

@Dochas12111 thank you! Yeah definitely not going to go with ARGC themselves and the whole moving to London thing but that’s really helpful. What made you not choose them by the way?
Hope the time is passing quick. It’s so horrible waiting ❤️
I’m very sure out this month. So that’s only one more before we start things up again on the IVF front I guess.

So the advice given has been to get back to IVF ASAP now. So just starting back process - will need the pre IVF screening bits done again as all timed out now. Obviously will still have a third and probably fourth cycle to try naturally while set things up. Thankfully GP has agreed to some bloods and swabs. Also advised more immune testing and to consider Humira - has anyone used that?
Wondered if anyone has used or heard of DAYE vaginal microbiome screening? @Gardenlady543 ? My EMMA/ALICE when done after two failed transfers was excellent thankfully but after lots of invasive procedures since, and peri operative and post op antibiotics, just want to make sure things seem okay. This has been recommended to me as a non invasive and cheaper test.

Thinking of you this week @Dochas12111
How are you doing @ChickenT2b ?

@Enfys23 I haven't heard of it but there's a few vaginal swabs on the market that test for bacteria RNA in the same way as EMMA ALICE. I did my last microbiome test at the end of 2022 then went on to have 3 x collections, fibroid surgery, a HSG and saline scan. I would do a week of metronidazole in the cycle before a FET and daily probiotics and keep an eye on pH, but didn't bother with any repeat testing. I would probably consider a vaginal test in the future, so it sounds like alike a good idea.

@Enfys23 I have done a Daye test recently. It's easy to do and cheaper. You won't get breakdown of the different strains but will get an overall idea. I had posted a screenshot of my results on page 10, you may want to take a look to see what you will get.