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

@Gardenlady543
I would delay my transfer if my fsh was not an issue but because it could spike again I have to be careful. The stimulated FET cycle with trigger is best option for me if my fsh is under control.

When would it be safe to stop canesbalance and/or vagibiom? Could I say stop on cd7? Then just take probiotics. I’m a bit worried as these are my last embryos. Sorry if I’m repeating myself.

@2021ivfagain I think just follow what would happen in a normal cycle, pH goes up around ovulation. It really is all theoretical. I personally would probably have the bleed, start 7 days of acid product, if you have loads of vagibiom and want to use more than that, I'm sure it would be fine but aim to be on a probiotic without acid around transfer time. I know someone who is pregnant that did vagibiom every day including transfer day and has been fine.

@Gardenlady543 on the plus side it seems to be a few months for most people's faces to snap back, but I was on pred for 6 weeks or maybe a bit more in April 21 (can't remember exactly)and my face has never got back to what it looked like before. It really harmed my self-esteem tbh. It does seem to be gradually getting better though, I think if my exercise kick starts soon (I have a rough goal to lose maybe a stone by May) I'm hoping it should shift the last of it/most of what is left of the excess fat.

I hope you're feeling a bit better today, and better still tomorrow.

Has anyone here done karyotyping with fertilysis? It costs 200 EUR with them vs £499 with my clinic vs £370 at Kings. Also, does anyone know if you have to buy a karyotype test EACH? I'm a little confused about if I buy one test with fertilysis or Lister or whoever and that cost covers me and DH or if that's really double the cost because you need two?

@Loz2467 hope those ovaries are quietly responding. Maybe bring your scan forward if you’re concerned? What’s your AFC and Amh? My AFC is higher than my Amh indicates. At least it was before my late miscarriage. Hoping my ovaries bounce back to before. re the brown spotting, I’d guess it’s hormonal (progesterone).l rather than directly linked to your egg reserve.

@thislittlebird I think that those prices are per person.. I wonder if there’s a difference between the tests at those clinics.

Ohhh @Gardenlady543 that sounds so so tough! :( the paper being passed to you aswell. That’s a lot to handle isn’t it. So many triggers within that time! I just hope you have some good support around you! I completely agree about the comments. I work in a retail store and people obviously knew I was pregnant with my late loss so they keep asking when I’m trying again although I’ve been trying for nearly 2 more years. So hurtful!

@CailinInUK let’s hope so! Sorry for TMI but I’ve had EWCM for the last 2 days so let’s just hope something is going on. Kinda expected to feel some twinges or something. If not I’ll just have to stim for longer. I tried paying for a scan yesterday or today and they said it wasn’t needed but it would of helped me especially as I have lining worries as my lining has never been right on my scan. I’ve had a hyterscopy so I don’t really know what much more I can do. I’m 36 and my AMH is 8.4 (hasn’t budged since January at all which is odd and makes me worry not even a decimal difference) and my AFC is 22. I’ve been on menopur 450 for the first 4 days and then just done my 3rd day of 300. So really those are quite high arent they? I hope it is hormonal. In natural cycles the cyclogest stops it but I’m worried why. Like what’s the underlying cause. Endo, egg quality, lining issues. Especially as my 19 week miscarriage was due to an infection and it was in the pandemic so I don’t feel like I got the correct care afterwards. Or is it simply age! I just don’t know. It started to happen 5 months after my MC. Month of my covid vaccine. X

@Loz2467 I have had mid cycle spotting which I only used to get once in a blue moon after I have covid but that was also during an ivf cycle. So don't know if its hormones or covid, I'm inclined to think covid itself as felt so crap and still not right 7 months later. Some people naturally get spotting anyway so who knows 🤷‍♀️

I was on 6 vials a day of menopur on one cycle, think that 300ui but can go higher as long as oestrogen isn't too high/bloods reassuring x

@Loz2467 lots of EWCM is a really good sign! Your AFC is really good and your AMH too. And 36 is not old! Low vitamin D can suppress AMH so maybe get that checked if you haven’t already. Is this your first stim cycle? The meds seem a bit high for your AFC but I would personally prefer a bit high than too low. I’m on the same dose but I have lower AFC, AMH and am significantly older! I’d like to be on more so might try to negotiate with consultant (450 is his max). I’d also like a step down protocol like you, to recruit most follicles at beginning. Sorry I’ve no ideas about root cause of the spotting. Will you try for a transfer on this fresh cycle or go for a FET? I guess you will be prescribed progesterone in either case.
i know I’ve said before but I’m so sorry for your loss. I had one at the same gestation after three IVFs and it’s heartbreaking. I’ve yet to find out cause but also suspect it was an infection. My concern is that my ovaries haven’t yet bounced back (in 2 months) so worried my stimulation won’t go well in March. I’ll have another scan in Feb to check.

@kerrym87 did you? It’s so strange isn’t it. I just kept thinking it will get better each month but here I am 18 months later and still brown spotting a whole week before period and no pregnancy! :( just can’t find a reason for it so far and it isn’t cervical ectsosion.

Thats what I’m worried about - my estrogen being too high! They don’t blood test me I don’t think?

@CailinInUK I was worried about being on a higher dose because I didn’t want OHSS because I can’t have a frozen in Feb because my partners away and then it’s March time! Maybe it’s because of my thinner lining too? I’ve no idea. Yeah so natural cycles I was on 400mg of cyclogest from 2 dpo whereas after the egg retrieval I’ll be on 400mg twice a day. Will just have to see it’s all a learn on my first cycle I suppose. I’ve had the vitamin D checked and it’s fine because I did think that because the first time I had it checked was Jan 2021 so I thought hmm it’s winter etc. started taking a high dose vitamin D and 10 months later it’s still the exact same. You know when you worry about Inflamation because of the vaccine causing it or potential endo etc. it makes me more nervous that my AMH and AFC is a million miles apart! X

@CailinInUK also I’m so sorry for your loss after your IVF cycles. It’s heartbreaking isn’t it. :( I just assumed everything was okay as I was nearly 20 weeks. I caught covid which caused chorioamtetis and the loss. I had a feeling because she stopped growing 3 weeks after getting covid. It was a MMC she stopped growing around 14/15 weeks and I found out at 19 weeks. So sad to be wondering around thinking I was still pregnant and planning the nursery to now having secondary infertility and going through IVF. I hope everything is good for you to start March time x

@Gardenlady543
Thanks for your help and advice. I hope your fast heartbeat is improving. What are your next steps?

I’m cd1 today so will start metronidazole tomorrow. I’ve stopped vagibiom now temporarily as don’t have many left. I’ll do canesbalance while taking metronidazole. My cycles are longer when I do oestrogen priming. I tend to get the trigger on cd15. Is it safe to stop canesbalance or vagibiom by cd10?

Does anyone know if having a heavy cold (not covid) affect nk cells? I did not want to delay my transfer.

Hi. I had to cancel my cycle today and I’m worried about a lot of things but didn’t have a choice.

My mum is still in hospital but this morning my Dad was rushed to hospital. I also have a cold with flu-like symptoms. I was told that as I have a cold it could affect my treatment and when they measured my lining it was too thick. I didn’t really want to keep my appointment as I was feeling ill and worried about my Dad but had already left home and was nearly at the clinic. Also I didn’t want to pass on germs to my Dad, so I’m calling the hospital twice a day.

Has anyone heard about a cold affecting the ivf treatment?

I’m worried about fsh levels but I don’t know what else to do.

@CailinInUK
I can understand how frustrating delays are for you but March will soon be here.

@Loz2467
I’m so sorry with what you’ve been through. Good luck with the egg retrieval.

@2021ivfagain just remind me was this a stims cycle or a FET? I'm sorry you've had to cancel. I'm on hold as well as I need to have a HSG next cycle.

@Gardenlady543
It is a stimulated FET cycle. I have to restart norethisterone on cd14. Last time I did norethisterone from cd14-32 inclusive to delay everything further as all my family were ill and my mum was in hospital.

I did an HSG cycle but with nhs when I was younger. It can be painful but it’ll be worth it if it helps with your next transfer cycle. It seems like there are so many obstacles! I was in tears today as it often seems everything is against the transfer.

Will you have to wait an extra month after that?

@2021ivfagain sadly this isn't a new situation for me, I had a HSG in mid 2021, I'm just going round in circles. If it is normal I will go to a transfer cycle in March. If abnormal I'll need a hysteroscopy again :(

Hi All, I hope you all don’t mind me joining in again. I posted a while back to ask for some advice on supplements. Thank you to everyone who replied and sorry it’s taken me a while to thank you all. Whilst I was waiting to miscarry my third pregnancy, my mum went into hospital and was in and out all summer. It was so scary. But she is better now and hopefully the meds keep everything under control.

Congratulations to Jane, myEastereggs and anyone else who is pregnant. I wish you all a healthy pregnancy. It’s such good news and gives us all some hope for the future..

I am sorry to those that are still struggling or have miscarried. It’s so heartbreaking. I am in the same boat. I am still ttc no 1. My miscarriages have been early and I have not reached the stage where I can see a heartbeat 😔.

An update from me, I did a fresh cycle in Oct and 4 of my embryos were pgta tested. 2 came back normal. I also did a fresh transfer at the same time on an immune protocol. In hindsight I should have done just a freeze all as I went through similar symptoms to Gardenlady - palpitations, high HR, but also high BP, elevated WCC and platelets (thought to be due to Pred or Inhixa). My chest area has not felt the same again and neither has my body. I have since developed a sinus infection which is now a chest infection that I have not been able to get rid off since December. The steroids do really mess with my body. I hope your symptoms have now improved Gardenlady?

I am thinking of doing a natural modified FET in Feb if I have recovered by then as I know the embryo is pgta tested. I have elevated NK cells and I am homozygous PAI and MTHFR. I take steroids and Inhixa / clexane. What I wanted to know if anyone has tried aspirin while TTC. And if anyone takes aspirin during an IVF/FET cycle and from when? If it doesn’t work, I will see Dr Gorgy who wants to do a number of tests on me which is near enough £3000. I have asked my GP to refer me to Dr S’a NHS clinic in the meantime.

I hope you are all well and wish you all the luck in your cycles / investigations etc. I am going to try and keep up with the thread now. Sending loads of love x

@Loz2467 thanks for your words. I suspect infection was the cause of our MMC too but still waiting post mortem report. We had a gender scan at 15 weeks and everything seemed ok. Then at 20 MMC, baby boy had stopped growing at 17.5 weeks. I’ll never be the same person again after that.

@2021ivfagain thank you. You’re right, a month is not much in the whole scheme but I’m already counting down the days. Trying to think of something to fill the time, something to look forward to. I’m sorry you’ve had such a rough time. I don’t know do any studies about effects of a bad cold but with all you’ve had to deal with, I probably would have done the same.

@RPishopeful so very sorry to hear of your losses. Steroids mess with me too. I’ve also struggled with my health since my miscarriage 10 weeks ago with strep throat, cough and cold, sinuses, head cold, etc. I’m normally very healthy and have healthy lifestyle. I’d hesitate to take steroids again. Similarly, I have slightly elevated NK cells and am also homozygous PAI 4G/4G, have MTHFR c.665C>T variant and lowish platelets. I had Inhixa, steroids, progesterone and oestrogen for my last FET (miscarriage at 20 weeks). I’ve not had aspirin. The studies I’ve read don’t really support aspirin on top of inhixa. NHS prescribes in pregnancy depending on risk factors for pre eclampsia or iUGR. I’d consider it next time, if there is a next time.

@2021ivfagain really sorry to hear about your mum and dad. Must be such a worrying time and you feeling poorly too. Sending speedy recovery vibes to everyone. And extra hugs for the pain of cancelling a cycle.

@Gardenlady543 I’m so sorry to hear about how awful and triggering the work event day was. People just don’t think and realise what others could be going through and if they’ve not been through it realise how awfully painful it is to be in this kind of situation. I really hope you are having some better days. I’m glad your boss sounds supportive. Do you have a date for the HSG?

@VenusStarr yes definitely heard of clomid for men with low counts. A friend of a friend was prescribed it.

@Loz2467 and @CailinInUK I admire both of you coming through such awful times. My DH has been a bit sceptical about how careful I am to not catch COVID during treatment and when I shared your story @Loz2467 he now fully understands why. I hope 2023 brings you joy and positivity.

Sorry I cannot contribute to the immune testing and pH discussions!

I had the day 8 scan. It was good news on that front really for stage of cycle I had a 13mm dominant follicle and 6.5mm lining which seems really promising my lining on track.

BUT. When I then asked about next steps in monitoring, basically told that’s it. Just wait for LH surge and ring in when happens (and cross fingers not Monday as they don’t do Sunday transfers). I’m really not happy that it’ll just be an entire guessing game as to whether and when I’ve ovulated exactly and if my lining continued to develop ok.

Everyone has said for months these are precious 2 embryos given my potential POF at age 35 so I don’t want to throw in our next excellent quality 4AB (9/10 on embryoscope) with just a wish and a prayer and not checking things out.

Is this normal to not have any bloods and no further scan? Everything I read online suggests natural cycle needs more not less monitoring. I feel I was being punished by her (she’s the nurse manager for clinic) for asking for an earlier scan as she’d advised Tuesday. Now the Tuesday slot filled up apparently.

@Enfys23 it depends what kind of cycle they are doing, yours sounds like it's fully natural. Mine they put me on an antagonist when the follicle got big but the lining hadn't caught up, so I wouldn't ovulate early. But this drops the estradiol so my lining didn't respond, I then needed menopur to get things moving. They had planned to use a hcg trigger so they could time when I had ovulated.

Hi @RPishopeful you're very clued up on where we all are! I'm sorry to hear things have been tough, I finished my last dose of steroid yesterday, the symptoms are ongoing mostly a high heart rate so I don't know if it's anxiety or my body reacting to being on steroids and then weaning off, I've also started Low dose naltrexone and built the dose up very quickly. My HSG I can't book until I am CD1, so another cycle off.

You can save some money on gorgy by doing the immune tests through Fertilysis, he will still want to do the nk activity biopsy though. I think he puts most people on hydroxychloroquine 200mg twice a day, prednisolone 20-25mg from cd7, inhixa from cd7. He also does a lot of LIT. Specialists have told me no aspirin as it affects cox so impairs implantation, but heparin aids implantation. Aspirin can be useful later on though. I have just done a natural modified and it was my first implantation ever, but was a chemical.

@Gardenlady543 it is technically meant to be modified as I have gonasi prescribed but because they don’t scan over weekend I might surge naturally.

@Enfys23 see they put me on fryemadel to stop that but it honestly it set me back, so I think you're probably ok, we have to just hope you don't have a surge that will land you with a transfer on a Sunday, do you know what day you need to not have a surge?

@Gardenlady543 thanks for the info. I agree I definitely don’t want anything that may hinder lining. It’s Monday I need to not surge they’ve said. I’ve just been reading papers where they monitor natural cycles much more closely as LH surge doesn’t guarantee ovulation and they check for follicle collapse and rise in progesterone as danger is you might misjudge implantation window based on urine LH surge alone. I’m so confused about it all but just don’t want to feel we’ve shoved in this embryo at completely the wrong time and missed implantation window. The 2nd embryo we have is a 4BC.

@CailinInUK I am very sorry for your loss and the health issues you have experienced since your MC. It’s so heartbreaking and cruel to have to go through. I hope you manage to get your health back in order. I was thinking the same about steroids but I will always live in the ‘what if’ in the event I was to miscarry again. It’s so hard to make the right decision isn’t it? My immune system was excellent but in 2022 when I started taking steroids during my cycles, I contracted covid twice and then the issues in October during my fresh cycle and so on. I have read mixed reviews about aspirin so I am not sure. Due to my slightly high platelet count, heamotology have recommended aspirin but I am being referred to the thrombosis team for further guidance. Will you be doing another cycle after the 3 months from your MC?

@Gardenlady543 I am very sorry to read about your chemical pregnancy. I know this must have been so upsetting and nothing anyone says will make it better.

Thank you for the advice. I will defo look at that website for the tests before going to Gorgy. He wants to also do an Emma and Alice to see if there is a hidden infection. I find the biopsy so painful as i had it done as part of the CERM trial for professor quenby. I am also worried if he says I need LIT therapy. Re the high rate, the A&E put this down to anxiety as well. It could also be the concoction of the meds you are on which has increased your heart rate and your body to react. I initially thought my thyroid was under attack as my TSH dropped from 1.7 to 0.36 but I was told that weren’t the cause. I read that you had something that was shown on the saline scan. I hope your HSG shows everything is clear and that bit sheds off when you menstruate. I have previously read trying naturally after a HSG is sometimes successful? Will you be doing a cycle in March? X

@CailinInUK I’m so sorry and the waiting is hard too. We lost 1st Feb 2021 and got our results end of June 21. I’m sure I have PTSD. It will just never leave. Such a shock :( I’m so sad about it all the time still. I always think I shouldn’t be doing IVF and should have an 18 month old and your now.

@Enfys23 completely aggee! Covid is such a trigger!

I’ve had my first ever IVF scan this morning! I’ve done 9 days of stimms and have around 3 follicles at 20mm and 3 around 15/16mm I think and then some smaller ones. My lining was 9mm and triple layer. She did see the black area above my lining which could be a fibroid, endo or adeno? But she did say if the Dr was concerned about it he wouldn’t of gone ahead with the IVF. Now waiting for the call from the Dr for when to trigger. Just trying to have no expectations really.

@Loz2467 those sound good numbers 👍🏼there’s plenty to trigger and lining sounds great. Let us know how things go with trigger and when you’re scheduled for egg collection. Sending positive vibes xx

@RPishopeful fertilysis also do a menstrual fluid test which is an alternative that avoids a biopsy. I wrote about the microbiome here www.reddit.com/r/infertility/comments/rwsxwy/theuterinemicrobiomeemmaalicemenstrualfluid/?utmsource=share&utmmedium=iosapp&utm_name=iossmf
I have had 6 endometrial biopsies and I think you get to the point where you've just had enough of painful procedures. I think I'd say I'm at an unimaginable level of stress right now, so wouldn't be surprised if my symptoms are anxiety, or like you say some medication issue.

I just got this watch that amongst other things measures heart rate, just over £30 and everyone thinks I have an Apple Watch, amzn.eu/d/aV0rtKm I'd recommend it if anyone is wanting to keep an eye on things, it also measures temp, no idea if this will help with monitoring ovulation but I can see. Has a setting called breathe that tells me when to breathe in and out!

So the plan is HSG next cycle, I can try naturally this month and next, I normally wouldn't because of the microbiome but the LIT is at its highest effect at the moment, so may as well try.

@Loz2467 sounds like you're all ready to trigger and get the collection booked it!