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

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Thank you @Gardenlady543 just had a mad phonecall with my GP. I had my bloods checked yesterday and he called me in a panic about my white blood cell count - genuinely think he thought I was on death's door as its 48. But I'm on the gcsf injections and he said my levels are what people get when they have a severe infection or sepsis and wanted me to go to A&E. But we've chatted and he is ok that I'm ok with the promise that I'll go straight there if I feel unwell over the weekend. Typically crp is closed but I've sent a message on the off chance someone's in over the weekend, I know they do still do ivf things on Saturdays. I'm assuming that this is what they want, just hope our little embryos have hung around to make use of it!

I'm off to a fireworks display with my niece and nephew tomorrow 😍 have you got any plans?

@DEIVF thank you, I've done some more cross stitch today which I find quite mindful. I am struggling a bit to just sit and I'm waking quite early, so think maybe a guided meditation would be good to try when I'm awake super early.

@VenusStarr the only time I have ever used G CSF was in oncology, patients often had 0 neutrophils and the treatment aim was to get it up. So with a starting count in the normal range I'd expect it to be above range in you. I don't know if there are treatment guidelines for monitoring during fertility medicine, I expect this is the only time it's used in patients who are in the normal range to begin with. Are you still on G CSF or was it something you took and now stopped? Prob worth a call about what to do if you've got any more due. I suspect they'll get back to you tomorrow. I'm having a laugh at your GP coming across your result without warning at the end of the week on a Friday, I think they'll need a spa weekend after the shock!

I am a bit worried about going to a crowded area with infection risk but I'm hoping to go to a display and try and stand away from people. I have very scared dogs right now as we can hear fireworks every where around us!

@DEIVF welcome but sorry you find yourself here. It sounds like you've had a hard run of it.

@VenusStarr glad you don't have sepsis. Also sounds like the GCSF is doing its job. It's natural that you would start to lose it a bit at this stage. This is a tough place to be. What cross stitch are you making? I love cross stitch but haven't done any in years! Xxx

Thanks @Gardenlady543 bless him, he did sound really worried initially. I'm taking it every 3 days, so next dose is today. Hopefully I'll be on it until 10 weeks 🤞 I do need to have bloods every 2 weeks whilst on it, so will be closely monitored.
I hope your dogs are OK with the fireworks this weekend.

@Janefx40 I've just made up a couple of cross stitches this time, my mom bought me a heart and butterfly wooden decoration, so I've done one for my miscarriages and one for me and dh to put on the tree this year. I do have a lovely colourful fox one that is started last year in my tww but still haven't finished. I'd thought we'd have it in the nursery but obviously things didn't go that way and I can't face that one yet.
I hope you're doing well.

@Janefx40 thanks for the warm welcome and congratulations to you! I hope you're feeling ok :)

@VenusStarr hope your anxiety is slightly better today. The app insight timer is really good for guided meditations. I also use audible and listen to audio books whilst I'm doing jobs around the house, going for a walk, mindfulness etc it helps to keep the mind at bay! I'll also just lie down and listen to a book but that sometimes sends me to sleep! Podcasts are also good as well. Its good sometimes to use another one of our senses. Glad you enjoy cross stitch. I've really gotten into embroidery. Hopefully you'll be able to finish your fox and get to hang it in the nursery 🤞

@Gardenlady543 thanks for the welcome. I haven't seen a reproductive immunologist per se but I want to see one. After my miscarriages, I had a ton of tests done at St Mary's in Manchester but they were all NAD. My miscarriage plan with them is 20mg prednisolone, 5mg folic acid and low weight molecular heparin prior to transfer with aspirin given when pregnant. I'm under Care Fertility and they agreed and put me on the same plan. My sister has high NK Cells (admittedly it's been a blood test, not uterine sample) and she has also the MTHFR gene mutation. I've not been tested for either of these but am on methylfolate and the prednisolone covers the NK Cells. My last transfer, we also did an intralipid infusion. Our embryos are euploid, so at least we know its not the embryos. I've had the endometrio tests and I need 148 hours progesterone, have 0% good bacteria so taking canesflor and had an infection (although wasn't told which infection) and given Metronidazole. I've had 2 x treatment of the probotics and antibiotics. I want to be retested to check it's all sorted but they won't do it but am going to push. So I've been reading with interest your info this particular aspect. I've also got endometriosis, had 4 ops for that and 2 D&Cs so I want that to enquire about that, if a hysteroacopy is needed. I gave up work 18 months ago to focus on this as I was doing 60-70 hours a week (I'm a physio on the NHS and covid made it mental for 18 months) and knew I'd never get pregnant doing that many hours! I've decided to take a step back from this and go back to work whilst we work out what is going on. I still feel confident it will work and am positive about it, it's just that the pieces of the jigsaw all need to come together and after this last transfer, I feel like we're trying to force a square peg in a round hole! Half the time I feel like I'm playing a chess match with my womb. I make one move and think I've turned the match around in my favour but something else happens lol

Gosh @DEIVF sounds like you’ve had a LOT going on but have also done all the right things. Why do you want to repeat tests if you’ve had the relevant treatment? Mainly for peace of mind? I followed a similar treatment plan to you after doing the Invivo tests, prior to EndomeTRIO, and my Alice and Emma tests were clear. I suspect they wouldn’t have been months before.

Welcome @DEIVF I’m sorry you’ve had such a trying journey as well. Glad you’ve found here too now.

wow @VenusStarr that must have been a just a bit scary. Glad you’ve got a nice distraction today. I find the Mindful IVF app really good. Also Bettina Race’s yoga/meditation on YouTube. plus cross stitch is great!

I am hoping all goes to plan for you @Gardenlady543

thanks everyone. I was kept in suspense yesterday had to phone in the end as I was worried it would get beyond their closing time, and left a message and they rang me back. They have no idea the stress we are under waiting do they?! Anyway all good to proceed thankfully next Thursday. Started my Cyclogest this morning . I’ve asked if they can do a mock transfer at same time as the past couple haven’t been the smoothest and they’ve had to faff about changing catheters etc and I know it’s not painless but seems unusually uncomfortable for me. Bearing in mind I sailed through the Hycosy (saline scan). So I want future transfers to be as smooth as possible.

Hi @MyEasterEggs yes it's mainly for peace of mind. I've struggled to find women who've had issues with Emma & Alice and the one I did find, had 3 lots of treatment and it made no difference. So it's been encouraging to read on here, that those who have had it have also managed to treat it successfully. Both mine and my husband's attitude to all of this is no regrets. If it doesn't work, we don't want any 'what if' thoughts. If we know we've given it our best shot and done everything, whilst it would be hard, it will also be easier to deal with than thinking 'if we'd done this or that' etc So any thoughts and suggestions from you lovely ladies will be taken on board. I'm open to any feedback!

@DEIVF has your partner had a SpermComet and urine culture? After years of being told my partner’s sperm was “perfect” based on a basic semen analysis, a urine culture showed he had BV so we were both treated for it. This in turn improved his sperm DNA results and then we went onto have ICSI. He was seen by Jonathan Ramsay who also checked for a varicocele.

We also worked really closely with Anna Firth at Melanie Brown Nutrition. She organised the Invivo and helped to optimise my health before egg collection, EndomeTRIO and FET. It’s been intense having to follow such a strict diet and take so many supplements (and I’ve been far from perfect 😬) but I think our investment in nutrition has been a huge help. If anything I just feel better in myself and more trusting of the process. But I don’t suppose I’ll never really know exactly what helped and even then I’m not far enough on to be confident these things have definitely worked for us.

@DEIVF I should add that I’m also being treated for immune, clotting and thyroid issues. So don’t want previous comment to come across as me suggesting nutrition was the answer to everything. It’s just one part of the (shittiest) puzzle. But I do think it had a big part to play in overcoming the microbiome issues, and some of the testing and treatment she suggested helped with infection too.

@MyEasterEggs thanks for the suggestion, my husband has only had a basic sample done and told there were no issues. However, unless you have the further tests you don't know. Unfortunately this is our last go, so we have to go with the embryos we have and hope he's no issues. We wanted to go with a known donor and they are like gold dust to find. Plus, 1 lot of egg collection and transfer is £15k for known donation and we just can't afford another round.

I think you're right about the nutrition, it definitely plays a part in the puzzle. I've done my own thing with my diet based on stuff I've read (no sugar, caffeine or alcohol, low GI, low carb, high protein, cut out red meat, eat good fats, nuts and seeds and for the last year I've also done gluten and dairy free). However, it would be good to know if what I'm doing is right or if I'm just winging it! So I'll contact the person you've suggested thank you 😊 and hopefully tick off that part of this bloody puzzle lol

Congratulations as well to you, how far along are you? Pregnancy after loss is so so tough. I read a book called Pregnancy After Loss which I found really helpful. I also recognised myself in my patients who had PTSD following covid, that I had it regarding pregnancy - being terrified of getting pregnant, going to the loo, any ache or pain, scans, staying pregnant etc I found a trauma counsellor who dealt with miscarriage trauma and no exaggeration, it totally transformed my outlook regarding pregnancy &miscarriage after 7 sessions. Whilst miscarriage is still a risk, my mindset to it is different and the sheer terror of pregnancy and not being able to enjoy anything about being pregnant has gone. If you recognise yourself in any of this, it might be something you want to explore as it could help. I've got everything crossed for you that all will be ok 💕

Ah sorry @DEIVF I didn’t realise you had embryos. I’ve lost track of the thread lately and retreated a little over the last few weeks. But if you have some embryos waiting for you when the time is right that’s wonderful news and I’m wishing you all the best for when you take that step.

We had six losses between 2016-19 and it took me two years to decide to try again, this time going down the IVF route, so I can relate to how you’ve felt. Fertility counselling and somatic coaching have been a great help. The anxiety is still there but it’s manageable through meditation, walking and yoga, though I’m not great at sticking to any of them. I just dip in and out as needed. It’s good you’ve found coping mechanisms too 💛

I’m 8 weeks today. Had a few very early losses so it’s reassuring to be beyond that point, but I’ve had others at 8, 10 and 16 weeks so have a long way to go. Might have another reassurance scan next week or if I’m brave enough leave it until the next one I have booked with PAU at 10 weeks. I struggle with scans and I’m in a bit of a bubble so don’t want to pop it!

@MyEasterEggs

Sorry to Jump in on the thread. I had bv twice due to flunctuatung hormone levels and a lack of lactobacillus. I have lactobacillus Jensenni but that’s it. I’m also dealing with reducing candida with strict diet but have been eating really well for 18 months. The issue is I take norethisterone and zumenon hrt for lots of cycles due to oestrogen priming.

What was your husband prescribed? I was treated but metronidazole twice but husband has not yet been treated. However, he does not have symptoms and for months due to covid fears he was sleeping in the other room!

I found out I had bv via swab also with invivo. They have helped a lot with ibs. I feel a lost cause, however, as TTC second at 41 but have 7 day 3 embryos frozen from a good cycle at 40. I feel like my microbiome will not be good enough. I’m having mock cycle now with Emma, Alice and nk cells but from what I’ve read 90% or more of lactobacillus really helps implantation. When I conceived my son in 2020, I was 38 nearly 39 and did a fresh transfer with no issues. I never had another swab done before transfer.

How long does it take to improve lactobacillus in microbiome?

@2021ivfagain not at all, the thread is here so we can support each other.

I can’t remember what he was prescribed but he also tested positive for BV. At the time I was negative but it showed up in his urine culture - an inexpensive test that he had at TDL - so I was treated with metronidazole at the same time as him. He may have had the same.

He had no symptoms whatsoever but think we’ve been passing it back and forth for years. After going through so much I’m amazed at how simple it was to test and treat but most of the clinics we’ve seen along the way only had wonderful things to say about his sperm. So often the focus is on the woman and while I do have other factors to treat, we lost a lot of time focusing solely on me.

Have you worked with a nutritionist to make a plan to improve lactobacillus? I used a combination of Invivo and Inessa products, and my diet was quite strict too, so it sounds like you’re doing a lot of the right things already. Hopefully your next test will show an improvement 🙂

@2021ivfagain oh I was also treated with Canesflor vaginal probiotics and Canesbalance. Forgot about that!

@MyEasterEggs

My problem is I’m still recovering from all the antibiotics I have had to take from the egg collections. Also I take norethisterone and zumenon each month (not for whole month) to regulate cycles and have done for egg retrievals, transfers, mock cycles etc. They contain a lot of lactose. I have to take these to prepare for cycles due to high fsh.

Where did you both get tested? My clinic never picked up bv but Invivo did. I have the same nutritionist as you. She has helped me sort out my ibs and has detected candida from last swab but there is always something wrong with vaginal microbiome. I’m on lots of probiotics, take prebiotic and doing vaginal pessaries but feel I need to go overboard on them just to fight against my poor microbiome.

How long did it take you to build up lactobacillus levels? I’m only high on lactobacillus Jensenni. I think I can delay my transfer to January but can’t delay too far as I want to do stimulated FET cycle.

@2021ivfagain all my partner’s investigations prior to egg collection were with Jonathan Ramsay. He had one trip to see him and pop into TDL to do the SpermComet and urine culture then he was prescribed treatment. Meanwhile, I did the Invivo, which showed no infection but crazily high levels of inflammation, so was treated for BV at the same time as him. I have a history of recurring UTIs, endometritis and my late loss may have been down to infection, so we were all on the same page in terms of treat underlying infection then focus on microbiome.

We went with The Evewell for ICSI IVF and I did egg collection in April and EndomeTRIO in June so had maybe five months to work on microbiome before the biopsy. It felt like an age but I was happier going into FET having had longer breaks after treatment cycles. It really takes it out if you and it sounds like you’re having to do a lot in yours.

@MyEasterEggs it sounds like the coping strategies you've got work for you which is great. I don't think the anxiety will ever fully go but if the strategies mean the anxiety is e.g. 4/10 rather than 10/10 that's always a win in my book! I know what you mean about the scans. I'll be the same and have them every 2 weeks like you. No idea what I'll do yet. You want to stay in the bubble but at the same time, the need to know is there. You've got to do what is right for you. You've had alot of losses at various stages, so you're sadly too aware that you know anything can happen at any stage. All you can do is remain positive and look after yourself physically and emotionally whilst little one continues to grow 💓

I have been thinking of you@seven201 wishing you lots of strength.

hope you’ve had a good bonfire night @VenusStarr @OrangeBengal @MyEasterEggs and some good distraction. It is so hard once you’ve been through this to enjoy this time and not have some anxiety.

@Gardenlady543 thats really interesting about the iron levels. It really is a case of feeling you’ve done everything possible and not having any what ifs.
I’m still waiting for hysteroscopy date. Did you all pay for this privately? How much did it cost you?

Hey @Enfys23, yes bonfire night offered a really nice distraction, we went somewhere local that did a display to music, which ended with God Save the King, which still doesn’t sound right, but was quite moving. Also went for my first proper meal out since finding out I was pregnant, which was exciting, I was trying out what I am and not comfortable eating, which is tricky and also quite a loaded topic. I mostly decided to trust my body. I ate quite complex dishes without any adverse reactions, so I think I made the right decision.

Hysteroscopy-wise I got this covered on my husband’s insurance luckily, if you have this option link it to heavy periods and not IVF as most insurance companies will reject IVF claims.

Welcome @DEIVF, you’ve definitely come to the right place for EMMA/ALICE/ERA advice. I had the EMMA + ALICE (came back normal) separately to the ERA (extra days required) as initially my consultant didn’t rate the ERA, however it’s possible it made the difference this cycle, also cheaper purchasing as a trio, so if you can and you plan on doing a medical FET, I’d advise doing all three.

@Enfys23 thank you. My hysteroscopy in September was just under £2300, that was under sedation and I had the scarring removed. I wasn't given a final price until after, so it can vary depending on what they end up doing eg they talked about sending off a sample (extra cost) but didn't.

Sorry for not keeping up. Had a busy week. I hope everyone is ok and those early pregnancy ladies are doing well.

. @VenusStarr when is your test day?

Not much news from me. I'm on cd6 of a letrazole cycle. I'm doing acupuncture tomorrow evening and a scan on Friday. Think ttc it might clash with when I'm meant to be away for a weekend without dh/sperm provider!

Met up with my uni friends today. 1 is single doing egg collection this week, another is just starting an egg collection cycle for trying for dc2, I was there, and a woman who has 2 already who announced she was accidentally pregnant with a third! I don't think we were an easy room to announce a pregnancy to!

@seven201 it's today. I'm 100% certain that it's failed. I've barely slept all week, my anxiety is sky high. I don't feel pregnant at all. It's all such a waste. No hope of this happening for us now. I'm sure dh is done with it all.

@VenusStarr good luck getting through today. I'm so sorry you're feeling so anxious (tho it is natural to feel that way). I hope you're wrong. Will be thinking of you x

@VenusStarr

Hi. I’m sorry you’re feeling anxious. Are you able to have a blood test instead?

It is a blood test today @2021ivfagain I couldn't face testing at home. Even though I know the outcome.

@Janefx40 I just feel broken by it all 💔