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

@Loz2467 yes, I think I've now collected the vast majority of diagnoses! I had a known fibroid at my initial scan pre IVF, was told it wouldn't affect anything and I should ignore it, I then developed another one, this one was 50% in the cavity, again small, but regardless of size submucosal fibroids have a big impact on success, I hear they release substances that prevent implantation and cause a physical distortion which also affects implantation. They removed both and guess what, both were submucosal, so the first one may well have been causing my issues. It sounds like the lesion you have is further out so maybe less likely to be the type of fibroid that causes problems, I was told to get a 3D ultrasound to help visualize, I think MRI is useful for adenomyosis. My understanding is if it's a submucosal fibroid the answer is to get it out surgical. other types of fibroids cause less issues, but if they are big they can cause problems. If it's adenomyosis my understanding is you would need to look at supression.

@VenusStarr I thought this for my friend as well, that it could have explained her miscarriage although the STI clinic didn't think so. It certainly won't be helping, so best to get rid of it. No LH surge yet, there is still a chance it will come even though I had a 16mm follicle 3 weeks ago now. I may not ovulate, it hasn't happened before but after the chemical and then the invasive saline scan my body has had a lot thrown at it. My poor body/ our poor bodies 😞

In my ivf protocol both of us had doxycycline prior to egg collection each time, interesting to know its useful for something as it bashes my gut every time 😒

You've been through a lot @Gardenlady543 ❤️ I hope your body settles soon.

My dh said similar, that it's unlikely to be the cause, but my view is with our history we want to try to optimise our chances. Especially as I've seen it's linked to later term losses as well 😔

The test should arrive today - my period came today, it's a urine test, do you think it's OK to do or should I wait until af has finished?

That's interesting @kerrym87 annoying that different clinics are so different in their protocols and approach! Hooe you're OK.

@VenusStarr
Wonder if the urine test might be good with the period as if it's in the uterus you will be getting traces of menstrual blood in the sample.

Worse case scenario they will say to send another sample I imagine.

@VenusStarr does seem beneficial to catch some menstrual fluid too, as they’re looking for a bug rather than checking for blood I imagine it would be fine. Can you contact the lab to double check? Hope you get an answer quick. That’s interesting @kerrym87 . We have some in the house from taking it to Scottish highlands in case of tick bites so maybe would do this if transfer not successful this time.

Any signs of surge @Gardenlady543 ? I’m not surprised your body has had quite the battering recently but so frustrating when you want to get that HSG booked asap .

How are you holding up @Loz2467 ? I agree with @Gardenlady543 day 3 updates can have lots of pros and cons. I so wanted to know but found waiting for and taking those calls so so nerve wracking especially as we only had 1 egg in cycle 1 and 3 in cycle 2. Not long to hear now though for you.

I had my check scan this morning. Lining 7.3mm today. I’m trying to be positive that hopefully this means it was more than that and has compacted down a bit. She said it looked like the right changes were happening with progesterone with lining changing texture. Also looked like I’d ovulated from left ovary which is side I got my ovulation pain day after surge. I’ve done my progesterone blood test today. Hope it gets to lab for tomorrow morning. I’m booked for a pre transfer acupuncture (if nothing else helps me keep calm) then just have to hope one of the two embryos makes it in the defrost😬

Thank you @Gardenlady543 and @Enfys23 the clinic have said to wait til my period is finished. It's £300 so want to get it right!

That's good news about your scan @Enfys23 it will definitely have compacted a bit with your progesterone 🙏

Hope you're OK @Gardenlady543 it's stressful when our bodies don't do what we expect x

It's not letting me tag you 😒 x

Does anyone have an opinion on whether to use Invivo or fertilysis for the microbiome test? I had a test with fertillysis before but wondering which one to use for the retest 🤔

Sorry for the late response. @Gardenlady543 I’m glad you pushed for it to be checked considering they both ended up within the cavity. I remember you having the surgery and healing afterwards. It’s strange because I don’t even know what it is! If it’s focal adenomyosis then nothing can really be done in the myometrium so I’m just a bit lost really until I know more info. It was extremely obvious on the scan. The nurse didn’t even have to point it out to me. :( I just feel it’s what can be causing our secondary infertility issues!

Weve just done our first ever transfer! We had 6 good quality day 5s so 5 are in the freezer. Fingers crossed! Xx

That’s great news @Loz2467

Our better graded embryo of the 2 warmed up well from storage so we were able to proceed with that. After a couple of quite painful transfers this one was entirely painless (consultant thinks hysteroscopy procedure might have helped straighten and slightly dilate my cervix as I had a real kink in the angle of entry from cervix to uterus that caused issues previous times in getting catheter in and pain for me). Hoping that’s a good sign.

@Enfys23 that’s great news!!! Everything crossed! I had to have A specific speculum as my cervix is tilted so it took a couple of goes and my bladder was super full. It wasn’t painful really and once he changed the speculum it was fine. I had a smear many years ago when the nurse couldn’t find my cervix properly for a while and then I’ve had strange forward smears xx

@Loz2467 and @Enfys23 did you both have transfers today! What are the chances, good luck to you both, glad it has gone well.

@Lori2022 I don't know much about invivo is it just a vaginal swab?

LH sticks seem to be starting to get some colour but no where near matching the control line.

I've had a bit of a stressful time, I have extra annual leave and they said they need to decide if I can carry it over at the highest level so I ended up sending a summary of everything that's going on to HR, how can they decide without knowing my situation.

Hi everyone, hope you’re all ok. Not up to speed as usual. I’ve found it hard to be on here lately when nothing much is going on for us.

We had an appointment with Guys Urology in the week. That was a bit odd, we didn’t know where the appointment came from but it seems it was one of my moany emails copying in lots of people 😂. We were hoping to see Tet Yap but ended up seeing a fellow. Anyway, they’re going to scan DH and consider removing his varicocele. Obviously that may make zero difference because his count isn’t the issue so we aren’t putting a lot of hope in that, I’m not really sure what to make of it.

I need to book immune/nk tests and I’m a bit overwhelmed and confused by it all. Also annoyed Guys didn’t agree to hormone tests for DH so we’re either going to get them privately or ask GP to run some. We have yet another appointment at Guys with andrology and IVF (old clinic) in Feb and I’m hoping we can get some tests done and take them to that appointment, assuming it goes ahead.

DH needs to have a tooth out which he isn’t chasing 🙄 and then possibly a varicocele so we have months and months of nothing, it’s stressing me out. More so since I found my first grey hair. I can’t really believe we have much hope tbh, just feels like the opportunity is slipping away while we waste months trying to get the sperm in decent condition again.

@Gardenlady543 Hopefully HR will be understanding. I also had a run in with HR. They flagged my sickness to my boss, who is fine with it, but it really upset me yesterday because i don’t want to be off sick being depressed, having an early miscarriage or failed ivf. I wanted a baby like everyone else and I didn’t get it.

@Gardenlady543 I’m glad your LH seems to be on the rise and it will be here any day soon. 🤞🏼 I hope HR read your case and are understanding. Infertility can feel so isolating and issues at work isn’t what you need. My work think I’ve had a lap. My actual store team anyway but my district manager and HR know my situation.

Also can I ask. Obviously after my scan on Saturday when my lining was triple layer and 9mm. Nothing got checked after that. Is that because progesterone compacts it? You couldn’t really see it at my transfer today but obviously the scan is abdominal. I just expected to because to see some kind of lining though and when the dr said good luck and the lining looked “okay” and the embryo was “good”. Why wasn’t my lining good. :(

@thislittlebird I’m so sorry it sounds like a lot of going on for you at the minute. I’m hoping you can get some answers soon. I’m only just starting my IVF journey so I’m not the best with advice.

Everything crossed for those who have had transfers ❤️

@Loz2467 I've never had anything checked after transfer apparently as its not always helpful if lining right thickness and bleed doesn't start til I stop progesterone but I find it a little odd. Suppose though if it's an implantation issue scans bloods and increased progesterone will only go so far....think it varies by clinic too

@thislittlebird I definitely seen research about varicocele surgery improving issues with quality and dna fragmentation etc in those who had normal counts. Toby Trice from Himfertility was talking about this on a podcast too. I know it’s so hard when there’s long waits for tests when you’ve been hoping for another cycle/transfer asap. Sending lots of strength. And don’t worry I’ve had greys appear since age 17! I’m 35 now and if it wasn’t for hair dye I’d be very very grey.

@Lori2022 thank you 🙏🏼

@Gardenlady543 I'm sorry you are facing this. Your boss sounds understanding so hopefully they can have some influence too. There’s a new rule in my work about giving x amount week’s notice of leave, I wrote a bit concerned and they reassured me they realised my situation was different and might need to be very short notice at the moment. I hope your HR as understanding as this ❤️

@Loz2467 if your lining got to where it needs to be on day 10 of stims then you wouldn’t need any further scans and the lining changes and compacts after progesterone so less useful measurements (and you naturally lose triple layer look). And you can’t tell anything from an abdominal scan when bladder full as well re the lining. Don’t read too much into it - medical staff don’t always think through how certain words might be interpreted by the patient. In this context I’m sure good okay great excellent all meant the same thing.

Hope everyone else is doing okay.

I’m going to take a little break from my phone for next couple of weeks so see you in the other side 😬🤞🏼xx

@Gardenlady543. Sorry for the delayed response. I am sorry you are going through a stressful time at work. I hope HR are understanding and you are able to get to carry the holiday over. Good news about the rise on the LH sticks, hopefully your surge will be here any day now.

Thank you for the information on the microbiome, I will refer to this. As Gorgy has now recommended this, I will have to see it through if my first pgta embryo doesn’t work. As I have been on antibiotics, I am
taking canesflor as a precaution.

The watch is a good idea. I used to have a fit bit but I used to stress and have anxiety about my resting heart rate etc every day so I had to take it off.

I had an ultrasound of my stomach and pelvic area and apparently I have a 4 mm fibroid, but I don’t know the type yet so I don’t know if it’s going to affect fertility / conception / implantation. I need to obtain the records from the NHS for my care consultant. I am on day 3 so I am thinking I could just book in with Mr Lower or Mr Trew who could do a scan and tell me if it’s going to affect anything otherwise there is going to be a further delay if I have to remove it.

@MyEasterEggs - I am sorry that you had a late loss. I know the worry never ends but I will have everything crossed for you and your little bubba.

Thank you for the advice on your protocol and aspirin. My protocol is very similar to yours bar the aspirin. I think hematology will recommend I take it but my care consultant has advised against it, so I don’t know what to do. If you don’t mind, can I ask what time in the day you took your baby aspirin and clexane?

In terms of the progesterone, on my last cycle, I was on lubion x 1 and utrogestan x 1 in the evening. On the day of the transfer, my level was 65. This cycle I will be on lubion x 1 but also cyclogest x 2 400mg so hoping my progesterone will rise above 100. My care specialist haven’t recommended prontogest. Is that more effective than the others? How often did you monitor the progesterone? Sorry for the all the questions.

@Enfys23 and @Loz2467 glad your transfers went well and good luck to both in your tww.

Wishing everyone else well. Enjoy the rest of the weekend xx

@RPishopeful Mr Trew doesn't do fibroid surgery, I was referred to Mr Farthing, 4mm is very small, mine were 10mm and 20mm and they wouldn't haven't been operated on without my history.

@Loz2467 they look at the lining pre Progesteone, while they might make a general comment on how they feel it looks on transfer day. It's not routinely done and comes down to subjective opinion if a comment I mad eg this looks nice.

My LH sticks went white again after looking promising Friday evening and Sat morning so I don't know what to think, this cycle is clearly very weird.

@Gardenlady543 so you think I need to not over think the comment because they can’t tell any quality on abdominal ultrasound anyway? Sounds crazy but I just feel it looks diff to what I see on peoples Instagram posts. Yeah I’m that mental person. Haha. I’m just worried as they’ve always said my lining doesn’t look “right” after the progesterone hits because it doesn’t have a clear edge etc? Maybe that’s the adeno. I dunno.

@Enfys23 good luck to you and enjoy your phone break. Yeah I guess I’m completely over thinking and it comes from my paranoia from my scans post ovulation and I need to try and remember everything looked okay on my final scan at the end of stims.

They always said mine doesn't look right on transfer day too @Loz2467 but I noticed if I asked how it looked, they would say it looks fine and then only tell me once it has failed, so I don't know how honest the answer is anyway. I do think it's very subjective on transfer day though and the studies only assess the thickness and appearance before progesterone is started. So I don't know how much value should be given to any subjective opinion on transfer day. FWIW every transfer picture I have seen looks completely different, I think some clinicians like to hand people something after the transfer even though it really doesn't show much.

Just popping on to say good luck to @Loz2467 and @Enfys23 for your transfers!

@Gardenlady543 thank you for your reply. I don’t know much about fibroids but its good to know I may not need it removed but I have had 2 MCs at 6 weeks and 1 CP, so I just worry about it. I assume the fibroid will grow and then I will need to get it removed or do some just stay the same size? I am sorry the LH sticks went white again. I have weird cycles a few months after fresh ivf’s and miscarriages.

@RPishopeful with fibroids it also depends exactly where they are. I've always had fibroids and had it throughout my (successful) pregnancy with my DD. They always mention them on scans and then say they won't impact anything.

@Loz2467 the important measure is what your lining is doing on the day of surge/trigger. All the research is done on the thickness and quality at that stage. After that it changes but as far as I'm aware as long as it is good at that earlier point, that is what matters.

It's hard not to get hung up in the wording of the docs but sometimes they are just using words and not realising we are going to analyse "ok", "good", "perfect". I really annoyed the embryologist at my recent transfer because of how she described the embryo. My partner thought I was mad but the way she was phrasing things sounded like the embryo was passable but not in a great state!

@Gardenlady543 hope your leave gets sorted

Sorry not to respond to everyone but hope you are all ok and sending love. Xx

Thank you @Janefx40 so many anxieties about lining because of all the things picked up on scans and this “adenomyosis”.

I was going to call the clinic today to see if I could book a call with the Dr this week as I feel anxious about different things being said about my scans / lining / adenomyosis / brown spotting etc but what’s the point. It isn’t going to change anything and I might aswel wait for my follow up app. It’s just with my Dr retiring I don’t really have a go to!

I don’t feel a thing and I know most people usually feel cramping 2 days after transfer. Even the cyclogest isn’t making me feel crampy anymore but that used to happen in my natural cycles when I had it. After 6 nights of it I didn’t really have any cramps etc.

@Loz2467 I really thought I could tell when I had implanted and not (I had 6 transfers and had some form of implantation in all but 1). But this last transfer blew that all out of the water. I felt literally nothing and it was positive. I honestly thought I was so experienced that I knew what was happening in my body! But nope. It's one of the hardest bits because no amount of researching or googling can help tell us what is going on in there. Have everything crossed for you x