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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

ERA/EMMA/ALICE Testing Thread 3

999 replies

Janefx40 · 02/01/2022 22:33

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

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SUMMERTIME02 · 21/02/2022 19:56

[quote Gardenlady543]@SUMMERTIME02 Ingenomix usually recommend 500mg of metronidazole twice a day, in the UK getting hold of 500mg can be tricky as it's usually prescribed in 400mg tablets. So you either need to be taking 500mg twice a day of 400mg three times a day.

The canesflor needs to be taken once daily for 10 days in a row, ignore what it says on the packet, if you want to go on and use one a week then that's absolutely fine but take the 10 day course initially.

Optibac is an oral probiotics with strains in it that have been found to improve the gynae microbiome, you can (and in my opinion should) take a daily probiotic with these strains in: with the antibiotic course, with the vaginal probiotic course and forevermore. Try to take it a couple of hours or more after you have taken the antibiotic and not at the same time.[/quote]
Feeling so frustrated today, i spoke with the nurse advice line and asked if i can take the Canesflor 10 days in a row, rather than how it says on the box.. but because the Dr has advised for me to take it as the box says to (6 days then once a week for 4 weeks), i will have to waste 6 (waiting for my period to finish and start the 5 weeks) and further delay my FET :(((

Gardenlady543 · 21/02/2022 20:22

@SUMMERTIME02 I don't think your clinic are telling you the correct information. Ingenomix write to take one daily for 10 days on the reports (highlighted on image attached). I would do one a day for 10 days and then do one a week of you want.

ERA/EMMA/ALICE Testing Thread 3
SUMMERTIME02 · 21/02/2022 20:54

@Gardenlady543 thank you for that copy, i will call tomorrow and ask again. Its annoying because i feel like the nurses are getting fed up with me because im doing my own research but i totally feel like they're not advising me correctly :(

Janefx40 · 21/02/2022 21:05

@StillTrying10000 I'm sorry you're still up in the air with it all. Don't apologise for being self-obsessed. Firstly, you're not. Secondly, you're allowed to be. This stuff is all consuming.

So today you have had negative tests or just not darker? But did you have a positive 2 days ago? These final days before test day are just maddening.

Yes Mr Shehata basically said that uterine biospies are meaningless because they only tell you what was going on at that specific moment. He also said all my previous blood results were invalid because they had been sent to Chicago and the transportation damages the sample. It slightly undermined my faith in him tbh. But we shall see what comes of it all.

I've properly come on now so stopping noresthisterone. Serves me right for trying to control things!

@SUMMERTIME02 my clinic said one daily for 10 days too and to ignore the instructions on the box!! So it definitely won't do you any harm.

@Gardenlady543 so frustrating about the centrifuge. Can you not return it and get a refund?

X

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SUMMERTIME02 · 21/02/2022 21:06

@Gardenlady543 this page that you have provided, under the list of recommended probiotics it says:

"These probiotics are commercially available in pharmacies, parapharmacies and online shops. Use these probiotics following the manufacturer's instructions."

I can already see my doctor telling me this is the reason why its been advised to take that way. Is there any advice or tips you can please give that will help my challenge the decision so i can actually take for the 10 days instead?

StillTrying10000 · 21/02/2022 21:50

@Janefx40 ahh yes I remember when I was deciding which clinic to go with the views on the biopsy's were totally different. Such strong opinions but literally the opposite.

I thought I had a feint line Saturday but I've tested negative since then. Every month I promise I won't torture myself with "what if's" when I know it's not worked again but I can never lift myself out of the madness when I'm in it. I wish I could just accept the negative result and move on but until OTD you feel there still could be the slightest chance, even though logically I know it's gone now ;-( xx

Janefx40 · 21/02/2022 22:05

@StillTrying10000 Ah I see. We all drive ourselves nuts in the final few days and I know that I always want to keep the hope alive even if I'm saying or expecting negative things. There are always examples of people who had positive results late on so there is always that glimmer of hope but sometimes that is the most painful bit. I've always found the hope the hardest part in a way. We've all been there and know how hard it is so sending you lots of love to get through this next couple of days.

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seven201 · 21/02/2022 22:22

I only checked the thread to see if the contribute had arrived  but a lot has happened.

@Gardenlady543 sorry your centrifuge hasn't arrived, and that it's now not essential.

@Janefx40 so annoying about the bleeding! You're probably right, maybe started it a little late. How annoying. Luckily your cycles are quite short anyway so not a huge delay. Very disappointing though.

@StillTrying10000 I'm sorry you're still in limbo. It really is a shitty time with so much over thinking. Hang on in there.

@SUMMERTIME02 I was told to take for 10 days too. I know what you mean - I feel like I am such a nuisance to my clinic sometimes, we shouldn't have to kick up a fuss to get what we need.

@VenusStarr I'm glad you have the new approach to re-set things. It can be such a long and cruel journey.

I have my Mr Shehata appointment on Thursday. As usual I'm having issues with me gp practice. I popped in today to ask if they had any more blood test results back. There's this new one but I think it should have values/numbers to the right (like the one below) but the receptionist says she can't see any. I don't even know what the test is Blush. I'm just going to leave it for now I think.

ERA/EMMA/ALICE Testing Thread 3
seven201 · 21/02/2022 22:22

Contribute? Centrifuge!

seven201 · 21/02/2022 22:23

And that wasn't entirely true, wanted to see if still trying (and everyone) was ok

SUMMERTIME02 · 22/02/2022 11:36

I rang my clinic again this morning and i've been told i have to take the Canesflor exactly as it says to on the box (over 5 weeks).
So i got fed up and asked if i can use a different brand instead that is recommended by Igenomix called Muvagyn (8 days course).

Now im waiting for the Dr to get back on whether i can. - Who wants to bet she will say No?!

I don't get why its such a battle for a treatment im fully paying for!

Gardenlady543 · 22/02/2022 11:49

@seven201 could it be that they have sent the vials to a lab in Maidstone? There is no test that I know of called Maidstone.

@SUMMERTIME02 your clinic confuses me, I have not found any fertility specialist that knows much about the microbiome. No idea why your specialist is so adamant about not doing a 10 day course, the instructions on the box are not for the scenario you are in. I personally would do a 10 day course and then do one a week to appease them, but I wouldn't cut short the course to less than 10 days. Anyway it's up to you, I can only tell you what I would do.

My centrifuge just arrived, unfortunately it says on the instructions to send off the sample on a Monday and Tuesday if possible (with the prearranged courier), I am sure it is next day delivery and sending in on Wednesday would be fine. To make it more complicated my husband is not here now and I'd need samples from him as well. My husband thinks it's better to get the samples on Monday, I would have thought there's more risk of the delivery being delayed if sent on a Monday as there will be a weekend backlog, but this is what the company says to do. So I need to decide in the next few minutes whether I go to where my husband is with all the equipment and arrange the courier for tomorrow or just leave it for 6 days and send it off on Monday and that way I'd be doing it where I am with all the equipment I need. I think it will take a few weeks to get the results so ideally want to send them off asap but also want the least amount of stress when it comes to it!

SUMMERTIME02 · 22/02/2022 11:55

@Gardenlady543 i know right. I am literally suggesting everything i can to them but they are being stubborn.

I reckon they are doing it so they can delay treatment to fit in with their availability.

Gardenlady543 · 22/02/2022 11:59

@SUMMERTIME02 they may well be but that's not a reason to tell you to reduce the 10 day course. I do what I think is best when it comes to the antibiotics and probiotics. With my first analysis I did exactly what I was told to do, they didn't want to repeat it but I insisted, only to find out that I still had 0.00% lactobacillus, so the next time round I did what I thought was right and clearly it worked as my third analysis was normal.

VenusStarr · 22/02/2022 12:30

I'm a bit late, did you go to your husband for the bloods @Gardenlady543? I would find this all so stressful. I hope once these tests are completed things will be smoother for you.

@SUMMERTIME02 I'm sorry your clinic is being annoying. Definitely follow Garden's advice :)

I'm glad your appointment with Dr S is so soon @seven201 I hope he has some insight for you and you can plan your next steps.

@StillTrying10000 I'm sending you so much love ❤️ this process is so hard, you're not alone xx

Janefx40 · 22/02/2022 12:58

@Gardenlady543 what did you decide in the end? Did you track down your DH or wait?

@SUMMERTIME02 personally I would just ignore the clinic. It's only an over the counter probiotic - it's not antibiotics or stims! It's honestly not going to hurt you and they will never know!!! The sad truth is that there is no IVF consultant that I trust entirely to make decisions about my care. They all have their limits and foibles. I personally feel that I have to make my own decisions and do my own thinking with this stuff. I am basically my own consultant and I use the Clinic consultant to sign my prescriptions and order the tests and scans - that's an exaggeration but only slight x

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SUMMERTIME02 · 22/02/2022 13:13

@janefx40 i've had enough with them and trust my gut and all you on here. I'm doing the 10 days whether they like it or now!
Oh and ive only just realised they gave me the wrong antibiotics amount. My prescription said 500mg of Metronidazole for 7 days and ive been given 400mg for 7 days.
I remember @Gardenlady543 mentioned it should have been 500mg and i only just thought to check back to a picture i took of my prescription and there it is, 500mg yet the hospital pharmacy gave me less and didnt even care to let me know!

Gardenlady543 · 22/02/2022 14:11

So I've decided on Monday for the sample collection since that is a day they recommend sending it and I won't need to travel to get my husbands sample, anyway it's annoying that it's a week away, but nevermind.

@SUMMERTIME02 sounds like a pharmacy error so I'd talk to the pharmacy you went to if I were you. The issue is that 500 mg is rarely prescribed in the UK, I had to phone so many pharmacies before I found anyone that had the dose in stock, and when I went to collect it it expired that month! I ended up doing two weeks in the end, I got hold of one week of 500 mg twice a day, and then took a week of 400 mg three times a day.

seven201 · 22/02/2022 19:39

@SUMMERTIME02 gosh your clinic are being annoying! Sorry you also have the wrong dose of the antibiotics. It's all these things that add up to a heap of stress.

@Gardenlady543 yay to the centrifuge! I want to ask you to put a photo of you holding it up on here, but that doesn't work when we're trying to be anonymous! Sorry you missed their deadline, I think you're right to wait.

I do think it probably has been sent to Maidstone. Not sure why or what it is! I might pop in the gp one last time tomorrow if I get a chance after work, in case it shows anything new.

@StillTrying10000 how are you doing today?

@Janefx40 do you have a full on period now?

StillTrying10000 · 22/02/2022 20:04

@SUMMERTIME02 gosh that's so awful!
@VenusStarr @seven201 thanks for checking in. Luckily being in london has been a good distraction today. I've never had to try to do my injections on a train sat at Waterloo before though! I was so afraid as I was an hour late already and wouldn't get back for over an hour I had to subtly do them under my dress. Was awful but I do wonder how many other women are facing the same challenge.
My temp was still nice and high this morning 8DP5DT my test blank. Clinic have said they'll see me on Friday to see IVF consultant but they also want me to see Dr S so they're trying to find a time for that. Now I'm hoping my bleed holds off so I have a plan before I have to start day 2 meds.
Any one have any thoughts- I have 3 Frosties left (from 3ECs) but I had always wanted to go into a pregnancy with some in the freezer. Am I being silly and I should worry about baby 2 if/when the time comes so should I just transfer them now (1each month) or should I instead do another harvest now to collect more for the future? I can't decide between the short and long term. My DH no help. Any viewed welcome, thanks! x

Gardenlady543 · 22/02/2022 20:17

How old are you @StillTrying10000 and what's been your history with collection cycles, how many have you had and how many eggs and blasts?

StillTrying10000 · 22/02/2022 20:31

@Gardenlady543 Oww I'd love your advice if it's on offer please. Only 33 but AMH was 6 this time last year. I've had 3 egg collections with 10 embroyos (2 not tested, 5 euploid, 3 abnormal). Age 30/31 I was getting pregnant easily but recurrent MC, high NK cells, had aspirin & HCQ got to 16 weeks, loss due to infection, passed naturally (no DC), since then I've been on enhanced MC treatment but no luck ovulating/conceiving/getting past 5 weeks. 4 superO & 4 IVF cycles. EMMA&ALICE tests all clear. xx

Janefx40 · 22/02/2022 20:41

@StillTrying10000 sorry about the blank test. So frustrating.

@Gardenlady543 makes sense to wait until Monday but the waiting kills us doesn't it?!! It was only last week I wanted to ignore Mr Shehata's advice because I didn't want to wait 2 weeks!!

This is my metaphor for IVF and life. I'm not even a rugby fan but I remember the last few minutes of the final of the rugby World Cup. It was a tied score and England got the ball but they didn't just kick it. We're all screaming for them to just kick but no. They passed and pushed forward and did whatever moves rugby players do in a systematic way even tho the clock was ticking down. They waited for the exact right moment before they gave the ball to the Jonny Wilkinson who kicked the winning goal.

It's what I live by. However frustrating and terrifying it is as that clock ticks, we have to get everything lined up right and hopefully once we do, we will get what we want.

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Gardenlady543 · 22/02/2022 20:42

@StillTrying10000 the 3 frosties are euploid ones? They say that people need 3 euploids to have a child on average, I guess it is likely more for people like us (previous miscarriages or recurrent implantation failure). If your current cycle doesn't work out then I think you can never go wrong with banking more embryos if you want more than one child as it's only going to get harder to create embryos in the future.

Janefx40 · 22/02/2022 21:03

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