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

@2021ivfagain unless there is evidence of an infection do not take vaginal clindamycin, it will wipe out everything including lactobacillus. I only mentioned it to @grcrobbo because they have evidence of a large amount of gardnerella and it's best to get it wiped out and start afresh with this kind of result. What you are doing is fine, I think you are getting yourself over worried about this, keep an eye on the pH, look out for symptoms, use the acids product and vaginal probiotics when you think you need them.

@kerrym87 I get that, I think resilience can be very low amongst all this and it makes things so much harder.

Hi all, I've been a bit of a lurker on your boards and know I have a lot in common with you all. I have had two miscarriages and one suspected ectopic and a total of 6 transfers now! Also several cancelled FETs due to thin lining. Exhausted from it all and don't know what to do next. I've had NK testing done under dr gorgy and did a microbiome test. Unfortunate during my surgery for ectopic I was found to have significant scar tissue around my ovaries, fallopian tubes and even my bowel was stuck. This relates to a previous infection/surgery - most likely due to my ruptured appendix when I was little.

Just a couple of questions for you all?

• how do you test vaginal ph?
• where do you all get your microbiome tested? I used fertilysis and did the menstrual blood and vaginal. Would be good if I could find a cheaper option!
• have any of you seen a specialist for thin lining?

Also seen reference to someone seeing Mr Lower? Any feedback? He's been recommended to me due to my scarring g but from what I read he specialises in asherman's which isn't what I've got!

Thank you in advance xx

Hi @BewilderedBee

Ashermans syndrome is adhesions and scarring in the uterus. The best people to see are Mr Lower, @seven201 has seen him and Mr Trew who I have seen. Both are experts in removing scarring without causing more damage which is a risk with other people.

The cheapest way to test vaginal pH I have found is this product amzn.eu/d/38wfSUx you will need to out a cotton bud in and wipe it in the wall of the vagina and then put the liquid onto the test strip, you want a pH under 4.5.

I used the EMMA ALICE and fertilysis menstrual fluid test. The only cheaper option I know of is a vaginal microbiome assessment, ideally one that looks for bacteria RNA, it won't tell you exactly what's going on in the uterus.

I don't think you'll find a thin lining specialist, if the thin lining is caused by Ashermans you want to see Lower or Trew for surgery. If it's due to estradiol deficiency then you will have to try different types of cycle to increase that and with everything else ruled out all you can do is add in meds that are supposed to help.

@BewilderedBee
If you have high fsh, I have found priming with zumenon for a week or so in previous month and then do a mild stimulated FET cycle for transfer. I’m 41 and have high fsh, but my lining grows to about 12mm.

I use Invivo which is expensive but if you know what infection you are checking for Home Diagnostics are cheaper and faster but less detailed.

I also use ph tests that @Gardenlady543 has recommended and they are really good.

@Gardenlady543

Thank you for your advice. I will keep an eye on the ph. I’m just worried that I’m living on canesbalance to keep things under control. Is that normal or is it due to my medication? I sent a swab to Invivo and one to Home Diagnostics so can’t do anything else. I don’t know what to do if I still have gardnerella. I’m scared about my transfer.

I’m still getting discharge but ph was 4 today using Invivo tester. Problem is when I stop using canesbalance things get worse again.

@CailinInUK

I think you are right to keep taking the probiotics as it can take months to build up. I hope your issues resolve quickly. When will you start stimming again? At least you will have time to build up with Lactobacillus after egg retrieval and before transfer.

Hi. I’m sorry for keeping on about ph but I feel as though my gardnerella is coming back this evening. This morning and afternoon I was feeling better and ph was 4. Later tonight it’s been really uncomfortable and now between 5 and 5.5. I know I’m still on norethisterone and zumenon but it’s every month my ph goes up.

I’m wondering whether ph is better after vaginal probiotic over night. Then towards the night it gets bad again. Do others experience it?

@2021ivfagain sometimes I do one test and it looks high then I do another at the same time and it's fine, just keep an eye on it and keep doing what you're doing. Are you waiting for a swab result at the moment?

@BewilderedBee hello. Yes, Mr Lower operated on me to remove a big adhesion (acting like a natural coil), re-sect my c-section niche and remove an ovarian cyst. I'd previously been misdiagnosed so had had lots of ivf that didn't have a chance of working. I was pregnant the next month (early Mc), nothing the next month, then pregnant the month after (early mc) after years of no pregnancies. I don't think the miscarriages are anything to do with the surgery as I have immune issues. @Addidas (formerly @cream123) is a big Mr Lower fan too and she now has a baby thanks to him!

My trigger shot is Friday 9pm but I had a dark ovulation test strip (I don't ever get darker than control line, and this was only a little lighter so as good as it usually gets for me) late afternoon today (Thursday). I'll do another in the morning. I guess I just do the trigger shot anyway and carry on with the intercourse schedule set by CRP. Stupid question - I have 3 follicles in the lead (think they were 14, 15 and 16mm on Monday). If I ovulate naturally will all three be released? If I trigger would all 3 release? I don't really understand how it works! Should do by now!

@Gardenlady543
I stopped canesbalance for two days but still took vaginal probiotics. I’m going back on canesbalance again but I get through so many boxes of it! Iit’s not normal. I’m waiting for a swab result back from Home Diagnostics. I sent one off today for Invivo as well. I suppose if it’s not cleared up I will need to take more and take chance on boric acid.

I’m deliberately taking more norethisterone to buy myself more time. I wish I could delay my transfer but think my microbiome will never be where it should be.

Sorry I’ve been quiet. Been tough going back to work after the failed cycle and DH away too. Plus found myself in limbo with the clinic - from being told consultant definitely wanted review, then told fine to just head into next FET, then that consultant did want review. Waiting to hear today what is the final verdict. Been reading about ERA in nature cycle wondering if should do this before next FET.

@seven201 I think if you ovulate naturally it will just be the largest lead follicle that would usually pop. I think if you trigger more likely more than one follicle will pop.

@seven201 the trigger will cause the LH surge, I think you should tell your clinic that you've spontaneously surged, I know someone that does hcg but as small more frequent injections after naturally surging. There is some evidence hcg helps, my friend had it in her fully medicated protocol. But I think get your clinics advice on what to do with it.

@2021ivfagain your body should be able to maintain a acidic pH once colonised. Are you doing anything that might be messing up the pH, water soap etc. Fertilysis told me some people won't shift the infection so they have them come over and have intrauterine antibiotics.

@Enfys23 I think @Janefx40 did a ERA in a natural cycle but I think it's probably going to make things a bit confusing if the result is anything but receptive, it's not as easy to shift things around as in medicated cycle and there will be more between cycle variability. Sorry to hear it's been tough going back to work :(

Thanks @Gardenlady543. I did email my clinic this morning and she said to carry on with the trigger at 9pm anyway. Good to know extra hcg might be helpful anyway.

Has work been any better?

@Gardenlady543

I don’t use soap there anymore. I have been eating 85% organic dark chocolate lately as I’m really feeling fed up. I am on norethisterone for a long time each month. I also take zumenon for about 8 days. I think the norethisterone and zumenon are causing it.

I just had results back from Home Diagnostics and they said I don’t have gardnerella which makes no sense. I’m producing a lot of mucous which feels uncomfortable and ph is raised. When I took the test I was taking canesbalance every day.

I don’t know whether to take the test that@CailinInUK recommended as it’s 10 days. Is that 10 working days?

I’m waiting for Invivo but that will be 21 days of waiting. I’m delaying my cycle as I know I have something. There’s no smell to mucous, but it’s just uncomfortable and ph is raised.

I wish there was someone at my clinic who could advise me of what to do. I feel as though when I took the metronidazole in January in made things worse.

@CailinInUK
Hi. Thanks for sending me the link about the other test. It’s strange it uses a tampon. I’m not familiar with this type of test. It actually said to leave it in for up to 8 hours and then put in freezer overnight before posting it! Where did you find out how long they take to diagnose the results? I like Invivo but 21 working days is ridiculous.

The problem is Home Diagnostics have said the test I had on Tuesday did not detect gardnerella so I don’t know what else is going on. Just not feeling confident transferring at present without sorting it. It wouldn’t be so bad if I was younger and had time to make more embryos. Can’t afford to make more embryos and husband’s morphology fluctuates as does my egg quality now.

@seven201 it is wonderful inbetween communicating with this person but then awful when I hear from them, I have been crafting my communication so it's spot on, but they always find a way to argue with me. Sounds like a good plan, maybe you will ovulate the eggs at different times with the trigger and this will give you more chances of implantation time being right.

@2021ivfagain why are you on noresthisterone so much? I don't think BV is usually uncomfortable, it's usually an offensive smelling discharge, maybe you have thrush?

@Gardenlady543
I’m on norethisterone so much to control my cycle for superovulated FET and also so I can safely do oestrogen priming. They advise to take progesterone with hrt to protect endometrium I think. The thing is last year when I did not take norethisterone and took something else I did not ovulate and my fsh rose to 24. Then the next month with lots of supplements and some hrt and zumenon it went down to 2. I’m scared ever since but had a good cycle when my fsh was 2 and oddly had lots of follicles but obviously my fsh is prone to spiking if not managed and suppressed each month. It’s been a battle. I have to do superovulated FET cycle as that is best for my lining.

@Gardenlady543 I meant zumenon not hrt as well as both hrt as you know.

@seven201 it sounds like today is your natural surge anyway and I read that triggering on your own peak lh has better outcomes for superovulation 🙏

@Enfys23 thinking of you ❤️

@Gardenlady543 I'm sorry the work issue isn't improving.

Hi again @BewilderedBeei ended up having to do low dose stims for my thin lining and it did seem to resolve the issue but it ended in bfn. Thin lining is so tricky to deal with and I was fobbed off by everyone I spoke to.

One week into our antibiotics, I've been fine but its upsetting dh's tummy 😞 we've got a week off now, looking forward ro a break. Hope everyone is well ❤️

@Gardenlady543
When I last had gardnerella, I did not have smell but just discharge which makes pants feel uncomfortable as it spreads to bum area sorry for tmi. I never have smell in vagina each time gardnerella has been detected but always a raised ph and excess discharge which spreads. I suppose I should give up dark chocolate and make something with carob powder instead. I might get thrush BV duo from Boots which has boric acid in it. Does boric acid wipe out lactobacillus? Does canesbalance prevent lactobacillus reaching vagina if using probiotic at same time as canesbalance?

@VenusStarr I sympathize with your partner, antibiotics can be awful, I'm doing metronidazole right now, last day tomorrow and will be glad when it's over, it always makes me feel sick.

@2021ivfagain boric acid is just to create a acid environment as far as I'm aware so should help lactobacillus to thrive as they need the acid to stick to the walls of the vagina. Are there other options for suppression, maybe worth exploring?

Thanks everyone. I’m just going to have the review on 20th now then aim for NC-FET next month. I’m feeling quite at peace with that. I don’t think I’m emotionally ready for 2WW and potential BFN so soon (I’m likely to surge this weekend so could be looking at transfer next week if going ahead this month which just seems so soon - I might kick myself for losing a month though especially if surge in March lands on day where I can’t then have transfer 🤦🏻‍♀️).

Hope things going as well as possible for you @seven201 and @2021ivfagain

When is your day 1 predicted @Gardenlady543 ?

Glad you have some time off @VenusStarr hope you and DH complete the antibiotics without too many issues.

@Gardenlady543
Unfortunately, there are no other affordable options. I have looked into Chinese herbs but don’t know how good they are and they cost a lot.

I have just got Boots thrush and bv duo with boric acid. It says not to use if trying to get pregnant but I’m on cd31 as delaying cycle using norethisterone so will probably get period next Wednesday.

It contains these ingredients. I don’t know what to do. Are any of these unsafe the month before TTC with IVF?

Hyaluronic acid (as sodium hyaluronate), lactitol monohydrate, polyethylene glycol 6000, boric acid, citric acid, crospovidone, magnesium stearate.

@2021ivfagain no other affordable suppression options? Are you sure, can you ask? I don't know, I stay away from products that advise not to take when trying to conceive, although I think balance activ says that, but I think that's because sperm likes an alkali environment.

@Enfys23 my app thinks CD1 will be 20th February.

@2021ivfagain I found out about the Daye turnaround time by emailing them an enquiry. They test for a limited number of biomarkers so always worth checking that’s sufficient. I checked out Invivo website and they quote a turnaround time of 15 working days so you could push for sooner than the 21 you were told. Perhaps not fast enough for you in any case?
You mentioned for me to give myself
time to sort my microbiome before transfer. I appreciate your optimism that I will get to transfer another embryo :). At now 44, the stats of finding a euploid are around 5% per cycle I think :( but I actually, possibly naively, think I can do it! I have to do it.
I hope you find out the cause of your discomfort. Try to get some professional advice? I know it’s much easier said than done as they can fob you off.

@VenusStarr sorry your DH has issues with the antibiotics.
Pardon the TMI but I’m pooping more often and unsure if it’s the antibiotics or the probiotics. I finished the course 9 days ago and still going 4+ times a day…. I’m currently doing one vaginal and two oral probiotics a day, one biocult, one Zita West.

I started my synarel spray a few days ago so next step is to wait for CD1 to arrange down regulation scan prior to stimulation.