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

@RPishopeful thank you. Still a way to go but holding onto hope!

Didn’t want to read and run when I might have something to contribute since I have similar results to you. The combination of PAI and MTHFR does raise chances of clotting so I take aspirin as well as clexane, and l took aspirin from the day prior to transfer. According to my clinic there’s some evidence that it can support implantation.

On Gorgy’s advice (I consulted with him separately for immunes) I also took prednisolone 20mg and had intralipid infusions from a few days before transfer then every four weeks. I went up to 14 weeks due to a loss at 16 weeks.

The other thing we observed closely was my progesterone, keeping it above 100 prior to transfer and beyond. I stopped testing after a few weeks since prontogest seemed to do the job for me but others are fine on lubion.

You may have got these answers already since I’ve only skimmed what’s now a very busy thread. All the best with your upcoming cycle. I hope you feel well enough for it.

Wishing everyone well 💛

I'm so sorry for everyone rubbish situation, mmc, I can confirm covid is shit as buggered up my eggs during ivf completely! I am just wondering around consultants/clinics who deal with immunology - are they all based down south as we are in North East england and on first inspection we have bugger all. It's gona be a complete arse if we have to then look at extended periods of time unpaid off work if I have to camp 200 miles from home for example for weeks at a time away from hubby etc. Although if that's what we have to do! Just hoping not everything is around london/Cambridge etc area 🙏

@kerrym87 I think the few reproductive immunology specialists are in London, mine does remote appointments, they also send blood kits so I can the send the sample to the lab without needing to travel. I just go down for biopsies and treatments, but that's just a few hours I'd need to be there for. Most act as add ons and the IVF can then be done locally.

@kerrym87

That sounds really difficult. I live in Plymouth so we have to travel 500 miles to my clinic and back and very often we are on the road for 15-16 hours a day.

@Gardenlady543
Hope your hsg appointment goes well.

Could I just ask if you recommend 100mg clotrimazole pessary when taking metronidazole. At present, I’m taking canesbalance and canesflor just while taking antibiotics. I was wondering if I could add in clotrimazole at the end for a few days maximum?

@2021ivfagain Fertilysis recommend alternating between a probiotic and antifungal when on antibiotics, it doesn't have to be the 100mg pessary as those are quite hard to get, you could just rub some clotrimazole cream on. It's because thrush is quite common when on antibiotics, so something to prevent it.

500 miles!! Where is you clinic?!

@Gardenlady543

Thanks for your advice. I will do that to prevent it. I also read that canesflor can also prevent thrush. Do you know if antibiotics are killing the probiotics each time I take them? I do separate this by at least 3 hours.

Also trying to eat food without sugar. I have a good anticandida pancake recipe which is good to help fight or prevent thrush as well.

everydaywithmadirae.com/coconut-flour-pancakes/
They are gluten free, vegan free etc. You can also make own nut butter milk without buying it.

It’s about 500 miles total sorry. It does take a long time. Every time I go there I know it will be a long day. My clinic is CRGH in London but I live in Plymouth. My husband drives as I cannot rely on trains and also as I’ll be on immune suppressants I cannot take the risk. But also trains are so expensive!

@Gardenlady543
Just realised it is not vegan friendly because of the eggs. I’m not sure if you could use a substitute as it’s a binding ingredient. I’m sorry.

@2021ivfagain you're doing it all right, I've seen it recommended that antibiotics and probiotics shouldn't be taken at the same time, space the probiotics out inbetween.

@2021ivfagain I used to get terrible recurrent thrush and had to be on fluconazole weekly for years. Finally got off this using Optibac for women (I keep it in the fridge). I use one a day and step it up to 2 if I feel a hint of it coming on. Really do swear by it. I think any antibiotics will sadly be bad for the flora but trying to ensure you boost good bacteria soon as you’ve finished course is good.

I had my surge yesterday on day 10. So they’re scheduling my FET on Saturday.

They’ve said they’ll scan me on Friday given I’m insistent but they cannot fit me in any earlier. They didn’t want to rescan at all but I made the point that their dr at last review said we shouldn’t transfer unless over 7mm and without rescanning how can we know?! Plus my lining has regressed between day 10 and egg collection day before.

I’m not sure how valid my lining thickness measurement will be by Friday but I don’t have much choice. Going to have to just be zen about it. I have ordered some medichecks progesterone tests to do my own testing as they’re not agreeing to any (bearing in mind I’m a private patient at CARE)…

They also told me to start progesterone today but I’ve read in proper scientific papers it shouldn’t be started until 3 days post surge in natural cycle FET as too much too early can ruin things too. It’s so frustrating that they don’t keep up to date or really want to get this right. They seem to just think the normal protocol one size fits all is okay for everyone.

If anyone has advice on progesterone testing and dosing that would be ace. I’ve got lubion and Cyclogest to take.

@Loz2467 how are you getting on?

@Enfys23 the lining measurements that are used in all the studies is on the day of surge/trigger so that is the number that you are really interested in. The lining can compact between that point and transfer and that's normal. Best of luck with your transfer.

@2021ivfagain I'm so sorry you've been having such a rough time

@Gardenlady543 sorry you've been having a difficult ride too

@kerrym87 I'm afraid as far as I know the only specialist reproductive immunologists are Gorgy in London or Shehata in Epsom. A few clinics do extensive (ARGC) or some form (CRGH, Lister) of immunology alongside treatment also in London.

Sorry I've been quieter but I do try to read your updates and still rooting for everyone. X

@Enfys23 I agree with Jane, all outcomes in studies are based on lining before Progesteone, you'd expect it to contract on Progesteone.

What progesterone dosing have they told you to take? You should test day before transfer as you have scope to increase it up still, my understanding it the level affects ongoing pregnancy rather than being an issue for what's needing for a receptive window.

I triggered on a Wednesday evening, had the LH surge Thursday morning and then started progesterone Friday morning.

Thanks @Janefx40 I hope you are ok ❤️

@Enfys23 Thanks for checking I had egg retrieval at 11:30 this morning and got 13 eggs. Obviously with the fertilisation and the drop off I don’t know how many actual embroyos I’ll get and then grades but I guess all I can do is day by day. I just worry incase the brown spotting is my egg quality and I get bad news on Saturday. I know that’s thinking way ahead but it’s because we never found a reason for it before going ahead with my IVF.

Are you due to have FET this Saturday? I’ll have everything crossed. They said they’d check my lining again today but they didn’t say anything.

i need to start 400mg cyclogest tonight.

Oh amazing @Loz2467 that's a great result!

Those are great numbers @Loz2467 crossing fingers for good news on the embryologist updates for you. Are you getting fertilisation report tomorrow?

Thanks, yes FET this Saturday providing at least one of our 2 embryos make it. The embryologists are going to contact me with a time for it hopefully tomorrow.

@Gardenlady543 @Janefx40 thank you yes that’s what I understood too. I really wanted scan today as closest I could get to surge on Sunday to really see what lining like but they said no chance. I’m going to try and just have faith it continued to grow well like it did in last natural cycle. Otherwise I’ll tie myself up in knots over it over next couple of weeks wait. I guess at least Friday may help confirm I’ve ovulated if collapsed follicle.

thanks for info on progesterone too.

@Gardenlady543 the start of a long journey ahead but it’s a better start than I thought!

@Enfys23 yeah I’ll get a call tomorrow to see how many fertilised and then I won’t hear till Saturday.

Did I need to get progesterone checked or anything? On Saturday which is the day I triggered my lining was 9mm and triple layer but the dark area literally above my lining in the muscle layer was so clear.. I’m wondering if that’s hindered getting pregnant or causing the spotting but I doubt it’s caused spotting. I dunno :( wish I had an answer for brown spotting.

Just had baseline scan and bloods today and progesterone is 2.6 I think, fsg is now 8.4 oestradiol wasn't back by 5pm despite having done 11am. Baseline scan shows 18 follicles which is about half my normal. Looks like we'll have to rescan etc next month but consultant just said its up to me if we go ahead however, still awaiting some results which may change his mind....nurse said results aren't bad but not great either and not my normal. I kind of hoped he'd say a straight yes or no, awaiting final suggestion from consultant. I'm not a specialist so bit annoyed if its a bit meh and expected to make an informed decision!

@Janefx40 Thanks. I hope things improve as life is very difficult at present with my parents both in hospital at the same time and my cycle being cancelled. I have thought about asking my mother-in-law to come out once a week to look after my son as I’m trying to work from home, look after my son and keep informed with what doctors are saying about my mum and dad from two different wards!

@Enfys23 Good luck with your transfer. I’ll keep my fingers crossed for you. I haven’t got thrush but@Gardenlady543 gave me good advice about taking cream for thrush as a preventative measure when on metronidazole.

@Gardenlady543

I managed to get canesten cream tonight but problem is I finish antibiotics Wednesday evening. I will take it this evening but could I alternate or take for 7 days. If I had alternated from start, I would’ve been able to take canesten on Friday, Sunday and Tuesday but this would have only been 3 days. Or is this enough if it is only preventing it? Sorry for the questions and thank you for your help and advice.

@Loz2467 Good luck with the call but that is a really good number.

@Loz2467 that a good number!fingers crossed they do their thing x

@kerrym87 baseline AFC of 18 is great, mine varies a lot. I'm surprised they are hesitating.

@2021ivfagain it's only cream, you can easily rub it on in the morning if you feel you need it and use probiotics over night. If you have symptoms of thrush then get a high strength pessary.

@Loz2467 clinics don't routinely check progesterone, not sure if I'd bother in a fresh one as you will make some of your own Progesteone as well, you could ask though.

@kerrym87 I thought follicle count of 18 is really good too! I had 22 so not much different but my AMH is showing low at 8.4 but I don’t have vitamins D deficient so I don’t know why. I’m armament I’ve got some inflammation coming from some where and suppressing it but I don’t know.

@Gardenlady543 @Enfys23 @2021ivfagain I’ve had the call and 10/13 have fertilised. So just a waiting game now until Saturday! Still not convinced but here we are xx

Great update @Loz2467 !

@Loz2467 this is excellent news. To put it in context with my low AMH 6.1pmol/l age 35 I got 1 egg in cycle 1 and 3 in cycle 2. So 13 eggs collected and 10 fertilised is really good. Really hope you they have great news for you on Saturday 🤞🏼

@Enfys23 @Gardenlady543 thank you!

This is why I’m thinking is just AMH off. Honestly I’m like a broken record but just so sick of brown spotting for 18 months now with no answers. :( yeah the cyclogest stops it but they’re must be a reason for it which we haven’t found yet and I’m worried that might stop the IVF from working.

Hi ladies, got my stage 4 endometriosis diagnosis yesterday and to my surprise I also have polycystic ovaries, he counted about 20 follicles on my right ovary. Left not visible due to endometriomas.

The doctor said not to worry about the PCOS and said that it’s actually a good thing. I found this to be bizarre as I’ve never heard that before.
Could it be because I ovulate regularly and so for me it’s just a case of having more follicles and therefore possibly more eggs at retrieval?

Anyway, I am starting to look at ivf clinics so I guess you’ll be hearing more from me now!

My afc is normally double that and was 30's previous 2 cycles but my progesterone is slightly high too, no idea why. With pcos more eggs are poor quality but you get more of them. @ChickenT2b with pcod tend to get alot more eggs to play with however , I'm not typical in that I have many follicles but don't produce as many as expected for someone with pcos. It's most frustrating