ERA / EMMA / ALICE testing thread 5(!)

[VenusStarr]

Just setting up a new thread as we're coming to the end of thread 4.

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22

❤️

@greendress789 can you post the results from your recent test so we can see what dysbiotic bacteria you have.

I had a big think over the weekend and decided just to push for another 2 x LIT treatments I don't know how I'll respond, but it seemed I responded a bit so hopefully with another 2 I'll respond a bit more, which must be better than how I was before. I have another session booked in for Tuesday.

I was at the breast clinic yesterday, I was supposed to get a BIRAD 3 monitored 3 months after a scan in January this year, but with the thyroid and surgery I delayed doing it. Anyway they spotted the area, it was a cyst and cysts are supposed to be all black inside but this one had some white in it. They said the department aspirates and if it looks ok they will leave it at that. So that's what they did, they said it looked like normal cystic fluid so they wanted to put it in the bin. I asked could it get sent to the lab and the radiologist agreed. I then asked if the result would likely to be normal and the reply was I don't know, which made me wonder why she wanted to throw it in the bin!

I also had the surgeon review today and asked a load of questions the histology shows both fibroids had overlying endometrium which means both were submucosal by definition. One was 1cm and the other 1.9cm, which considering my uterus seems to be 8 x 5 x 3.5 cm seems quite big. He said we won't know what my lining will be like until after the 2nd bleed so the mid cycle scan after that seems sensible. I'm waiting on my period that is due any time, he said the op can mess cycles up a bit for a month or two. He said he wouldn't haven't removed the fibroids if it wasn't for my history, so I don't know how much the op would have helped.

RE the ERA for non implantation failure, ie before any transfers. I found this study that doesn't include recurrent implantation failure or recurrent miscarriages:

"Limiting the analysis to those for whom ERA recommended a change in frozen blastocytes 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)."

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. Its an abstract rather than a full publication. But it's interesting to see the comparison of what happens when the ERA is ignored.

Thank you @Gardenlady543

@greendress789 what were the results of the first 2 and what treatment did you do after each result?

@Gardenlady543 here is the first results.

Second time they didn’t send me the results but the treatment was Clindamycin 300mg.

@Gardenlady543

@greendress789 that's interesting so you've had 3 different types of bacteria associated with endometritis. So it's not like one specific bacteria that has been resistant to the antibiotic and remained present, you seem to have cleared one and then had a completely different one take over. Enterococcus is in faeces, so it may have come into the vagina from there.

You might want to get some advice from a GUM specialist as they will know a lot about treating gynaecological infections, after my friend had 3 x abnormal microbiome tests she arranged a consultation here clarewellclinics.co.uk
She explained the situation to the receptionist and they arranged the consultation with the most senior consultant, they then did a vaginal swab and treated her with antibiotics when it confirmed the bacteria from the microbiome assessment was present. I don't know what there thoughts will be on the bacteria you've had detected, but I guess it's at least worth a consultation.

If you don't do that and want to follow the EMMA treatment plan then I'd suggest you do a very intensive probiotic course after the antibiotic treatment. The best probiotic on the market is florafemme, it needs to be ordered from the USA, there are only 5 vaginal capsules in a box and it's expensive and I'd recommend you get several boxes of it and you should use a vaginal acid product too. The aim is to intensively recolonize with helpful bacteria once the antibiotic has eradicated the dysbiotic one, to prevent another dysbiotic bacteria recolonizing.

I'd then recommend that you are incredibly strict with what you do after, probably best not to have unprotected sex, you can get your partners semen tested at fertilysis if you are worried that they are passing dysbiotic bacteria to you. I'd recommend that you don't bathe in water or go swimming, don't use soap near the vagina, don't spray the shower head up at the vagina. Basically leave the vagina well alone to give a IVF transfer the best shot possible.

Thanks for the comprehensive reply @Gardenlady543.

Do you think it’s an STD then? I haven’t had unprotected sex in years.

@greendress789 I don't think it's an STI in the way we normally think about STIs. The GUM doctors are used to treating gyanecological infections, including ones that aren't sexually transmitted. I would recommend having a consultation just to see their take on it, because you can't continuously repeat endometrial biopsies. My friend got a consultation really quickly.

Thank you so much @Gardenlady543 I will try the clinic you recommended.

@greendress789 ask your clinic for the second result as well as it will be useful for you to have all copies to show the specialist who will want to know the antibiotic, dose, frequency per day and length of course and dates of each course you took. I'm not sure that a lot of GUM specialists believe in these microbiome tests or what they think of probiotics. They will likely want to do their own vaginal swab, but I'd say at this point you need some expert advice.

@Gardenlady543

Hi. I’ve just had a call from a secretary at my clinic who has told me that my consultant does not understand why I took canesbalance even though it has helped lower ph and made me feel better. He wants me to take metronidazole but not continue with any vaginal probiotics after transfer. I feel really frustrated as I know I need to be taking lactobacillus pessaries after transfer to keep things under control.

All the secretary suggested was to book a follow-up after transfer day! What do you think? He does not put much stock in canesbalance or vaginal pessaries. I just feel like they are not listening to my concerns.

@2021ivfagain I can't tell you what to do as your specialist is being very specific with what they are asking of you. You might find it useful to have a read of this article, I think this explains the rationale for vaginal acid treatment and probiotics really well, the diagram I've attached is in the article.
sti.bmj.com/content/sextrans/80/1/8.full.pdf

In this research protocol they will be putting the treatment group on daily vaginal probiotics until the 6 week scan:
bmjopen.bmj.com/content/bmjopen/10/10/e035866.full.pdf

I guess the question is what should you do in the middle of a IVF cycle when you are close to transfer:

• If you are not symptomatic and feel you've responded well to acid treatment and probiotics will metronidazole do more harm that good and end up killing some of the helpful bacteria you have built up. Or is there still gardenella there as picked up on one of the two swabs that needs treatment. If your consultant insists on treatment then the minimum BV treatment would be metronidazole 400mg-500mg twice a day.
• Are probiotics useful in a treatment cycle, well I personally am going to be following the research protocol. I don't think this will do harm.
• What about acid tablets in a treatment cycle, this one is less clear, I think once you've got a good pH you should be able to maintain this and at most need 1-2 acid tablets a week. But you might not even need this if you have lactobacillus that's adhered to the vaginal wall then that will produce a low pH and as long as you're not disturbing the environment with semen, water, soap etc, then you should be ok. My concern with using these close to the transfer is that I know sperm like a high pH, so maybe an embryo likes it high as well, the vagina is naturally acidic but do you want a pool of acidic liquid from a vaginal tablet taking up with the catheter, maybe not. Embryos also like it dry so it's probably best to avoid putting anything in the vagina that will become liquid and get taken into the uterus with the catheter at the time of transfer.

@Gardenlady543

Hi. Thanks for your message. The consultant just said it’s too
much medication. What do you mean by acid tablets? I’ve not used acid vaginal tablets just canesbalance and canesflor. Do you mean canesbalance gel?

Does metronidazole wipe out all bacteria? I thought it spared good bacteria? It’s better than the other one which wipes it all out isn’t it?. I would’ve had to have taken a strong antibiotic near transfer day anyway. I don’t know what to do. Perhaps I still have gardnerella. It’s much better with canesbalance and canesflor. Just finishing canesflor.

I was going to take vaginal pessaries but stop a few days before transfer. Would that be ok? I was going to finish canesflor and take canesbalance again while on antibiotics to make sure ph stays low. I might just use lactobacillus pessaries instead and stop a few days before transfer. I don’t know?

I’m on cd10 so probably about 10 days away from transfer roughly.

Thank you for your help.

@2021ivfagain I say vaginal acid tablets as people use various products I use balance activ, canesbalance is a similar product, it's acidic and goes in the vagina to help it become/stay acidic. If you have a pH under 4.5 now maybe stop and keep an eye on the pH and use another if it starts going up.

Metronidazole spares lactobacillus better than other antibiotics but there is evidence it inhibits growth (www.ncbi.nlm.nih.gov/pmc/articles/PMC1784636/) and when I took it my pH was 7 while I was on it.

I think maybe play it by ear with the acidic treatment and probiotics, keep an eye on the smell and the pH and if you're concerned use some. I personally will be using a vaginal probiotic daily during my FET though.

@Gardenlady543

Thank you for your message. Is it better to use lactobacillus crispatus vaginal pessaries when taking antibiotics but just keep an eye on ph and take canesbalance if it gets high?

I wish my consultant was more supportive of lactobacillus crispatus vaginal pessaries. Will you be using these after transfer?

@Gardenlady543 oh balls!!! What rubbish news. You really do deserve to catch a break. So sorry. If it were me I'd do more LIT (and resent it).

@Hopeful199 congrats on being pupo!!

@Janefx40 is everything still good?

@MyEasterEggs I didn't/don't spread things out in that much detail. I just take levothyroxine while still in bed, a huge mouthful of pills after breakfast, some at lunch and another load in the evening. My Mr Shehata plan does say aspirin in the evening - only mentioning as your list has it as am.

Sorry I've been missing a while and that I have missed out lots of people on here. Hard to keep up!

I had another scan to check if my pregnancy/miscarriage from June/July has finally resolved. Looks like it hasn't. She thinks it's either a little bit of retained products or possibly an adhesion (aghhh). So cancelled ttc that month (was on letrazole - had 3 follicles getting ready) and having a hysteroscopy at CRP, hopefully next week. Fed up of there being yet another road block in the never ending mission that is operation make a healthy baby.

@seven201 oh no!! I can't believe it. Will the hysteroscopy be able to sort it out? Must be so frustrating.

@Janefx40 I hope so. Last month when I had a scan she said if it was still there this month I'd need a MVA to remove it, so I was surprised when she switched to hyseteroscopy. She made it sound like if it's the left over tissue they can remove it then and if it's an adhesion they hopefully can remove it then too but it depends on what they find.

She nearly did a saline sonogram while I was there but she said it would most likely show I needed a hysteroscopy, so might as well go straight to that and not pay for both. Bit frustrated I haven't got a date for it yet. Saw them Friday and I thought it was likely to be this week. It's under sedation not GA, so I'm really happy about that. I've assumed I just need the one day off work and probably my dh too (as can't get the train home on my own?). Anyone know?

I'm sorry @seven201 I had a hysteroscopy at crp under sedation. I'm glad you're not having to wait too long. I had it with Mr Jan. If there are adhesions he'll remove them. There will be an anesthetist to do the sedative. I had a really early op too, had to be there for 6.45am. Dh had to collect me. I hope you hear soon.

Sorry you had bad news @Gardenlady543 I hope the LIT does what it needs too.

I had a scan at the hospital that did my d&c. I'm cd4 and my lining is looking even and was 4.9mm. She didn't think the fibroids or adenomyosis were an issue. So technically good news but no further forward. We're on holiday next week then I'll have a nurse consult the week after then my period us due. Got my bemfola, just hope low dose stims is a good for my lining.

My mental health is really poor right now, so I'm still here but not contributing much

Sending love to all ❤️

@seven201 I’ll bear that in mind with the aspirin, thank you, and good luck with the hysteroscopy.

@VenusStarr sorry you’re feeling low. I hope your holiday gives you time and space to recuperate.

Sending lots of love to you all 💛

@VenusStarr thank you, that's helpful to know it could be very early. I think we'd have to bring dd with us (not into the clinic obvs) as childcare is even trickier at that time.

That is very positive about the lining. It's fine to not be further forward, you've chosen to slow things down for a reason. Go on that holiday and take the time you need.

@VenusStarr it's so nice to hear your voice. I'm sorry you have been low. That lining sounds good for cd4. I hope you have a good time on holiday and have some time to relax. Sending you love x

@2021ivfagain when I take antibiotics I alternate daily between a vaginal probiotic and an antifungal (clotrimazole 100mg pessary or clotrimazole cream). I'll be using a daily vaginal probiotic in my next FET from CD1 all the way through.

Thanks @seven201 when I got the report I was pretty down then the next day I kind of thought, well I'm used to this shit now anyway, what else did I expect. I guess I then had to adjust my boundary from trying it twice to trying it four times. Nevermind, at least I'll know I tried everything.
That's so rubbish about the scan result :( it's interesting about the 3 follicles, that shows that was a good dose to be on doesn't it, so you've got some info for the future? As for the recovery I expect it will be similar to the op you had with Lower. When I had mine with Trew last year I'd given myself one day off work but then the next day I was bleeding and in pain sat in the chair and took the only 0.5 days of sickness I'd had through IVF up until this op. So I think it's best to take 2-3 days starting the day after the op, I think at this point we need to give ourselves extra time not just because of the physical impact but also the emotional affect. After my recent op I decided to prioritize my recovery, my friend who is a doctor visited me the day after the op when I was lying in bed with a catheter in in a lot of pain and she had to have a stern talking to me, that it was completely unrealistic for me to be back at work within 2 weeks, I guess it's the marathon not a sprint analogy.

Really good to hear from you @VenusStarr sorry to hear you're feeling low ❤️ I hope the holiday is relaxing, when do you think you'll start your next cycle? Will it be a trying natural or a transfer cycle?

How are you doing @Janefx40 ?

I think my update may have got a bit lost in the microbiome discussion but I decided to have another 2 LIT starting next week. I had my surgeon review and I'm going to start back at work at the end of next week. And I got checked out at the breast clinic on Tuesday and had a BIRAD 3 lesion aspirated then got into a discussion about the sample going to the lab rather than being thrown in the bin.

@Gardenlady543 yes sorry I did see your update but you're right that it got a bit buried. I don't really know anything about the breast stuff but it's so weird that she was going to throw it away and then admitted she didn't know whether or not the fluid is normal?! There's certainly no harm getting it checked. It's so exhausting that we always have to be pushing and can't just trust the team to do what's needed themselves!

Think you are right to do the 2 LIT.

I'm am predictably struggling but also grateful to have got this far. X

@Gardenlady543 also I sent that too soon. Great that the LIT can start next week. How far apart are the two sessions?