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

Warning this is TMI but I’ve nowhere else to ask this 🤣

Since doing all the antibiotics and probiotics to get rid of bv, my vagina has lost any scent at all. It literally smells like nothing. I thought they were meant to have some scent but it’s gone. My partner who is also female hasn’t come across this before either. We’ve seen our fair share of them over the years haha. Am I broken? Has anyone else had this? Sorry again for TMI!

@Enfys23 I'm glad you've decided to take some time off. I'm a teacher and have done 5 ivfs during term time (with just appt time off) and one that happened to partly fall in the holidays, and that was by far the least stressful, and the only one to implant (although I think the other 5 had medical reasons not to work). It's important to put yourself first sometimes. @kerrym87 you too, take the time off you need. I think I need to listen to my own advice (although my job isn't as stressful as either of yours!) and take time off if I do a FET again - I'm just worried how it will go down with the leadership!

@Gardenlady543 sorry about your heartbeat/meds issues. I hope they settle. I'm glad the iron appt went well.

@CailinInUK sorry about the AFC and the delay that will cause. I don't take delays well so I hope you're ok. It does sound like it is worth waiting.

I had my Mr Lower appt today to check on this ongoing fluid in the uterus issue. He doesn't think it's an issue and thinks it will likely go after ovulation when my body (or drugs) produce progesterone. He says letrazole will probably be making me produce more cervical mucus and that it should just go. He suggested on my next letrazole cycle CRP do a scan 5 days after ovulation to check it's gone. If it hasn't I should go back to him for a hysteroscopy - he said it could be a polyp (I need to Google what that is, but I don't think it's a big worry) in my c-section niche causing it. He seems pretty confident that the fluid will just disappear on its own accord after ovulation anyway. Seeing as I was expecting him to say I needed a laparsocopy on my niche again, this is a nice surprise!

He said my adhesions after my June/July miscarriage most likely occurred from retained products. If I miscarry again I'd be best off seeing him for surgical removal.

I'm cd8 (no letrazole or anything) and my lining looked to be nearing 7mm - that is unheard of for me! There was fluid so the true measurement is probably smaller, but he said I had no issue with my lining this cycle. He said it could be the letrazole making my lining thinner. I asked if I should stop letrazole seeing as it's probably causing excess fluid and a thinning uterine lining, but he said it's still increasing my odds due to the 3 follicles.

This month I'm having a month off letrazole, steroids (meant to have a break every 6 ish months and I've been on them for 5 I think) and intralipids but we'll try naturally so I think I'll do the nytol and cyclogest.

Sorry, that was long!

Oh wow @seven201 this is great news, I had fluid in my natural modified cycle on letrozole as well and they said they thought it was cervical mucus and said it would dry up when progesterone was started. I think polyps are easy to remove in a hysteroscopy and people can go straight into a transfer after removal. Fantastic news on your lining as well. I think letrozole may have additional benefits as I have been told to keep trying it even though I just got the one leading follicle. Great plan on some supplementary meds this cycle, but not too much, this sounds like a good idea. So sounds like a good day for you!

Thanks @CailinInUK I do wonder how much the steroids are impacting on my symptoms, initially I thought it was all down to the steroids, I'm down to 5mg tomorrow, yay! Sorry to hear you have to have a cycle off :(

@Lori2022 I always keep an eye on the scent, it's really hard to pin point what the smell should be, doesn't Harry styles sing about a watermelon flavor, not sure about whether it should smell like one. The main issue is you want to make sure there isn't a fish smell, any fish smell is bad, no odour I wouldn't be that worried about.

Thank you @Gardenlady543. That's interesting that letrazole can have other benefits. A quick Google about letrazole and lining thickness the results are all about how it shouldn't affect it at all. Just don't know why it's doing so well this month. Maybe just from being relaxed / not being at work over Xmas!

@Lori2022 lol at 'am I broken?' I don't know anything about it but sounds like nothing to worry about.

That is good news @seven201 good luck with a natural cycle 🤞🏼

Mother nature can be a bugger sometimes. CD1 today which means day 10 Sunday so the clinic closed. They don’t want to bother with day 8/9 saying my lining won’t be thick enough by then. And then they say day 11 scan and trigger would mean can’t do transfer as transfer would fall on a Sunday . So I’m booked for scan day 12 Tues 17th. Might be ok but I’m known to surge and ovulate as early as day 9/10 so am going to be nervous this entire time 🤦🏻‍♀️

Hi ladies, sorry I haven’t caught up on the thread. I hope you all had a wonderful Xmas and new year.

I worked it all and then just had 3 days off to recover before starting my stims and ended up getting an absess on my wisdom tooth so I’ve been in agony and also panicking about painkillers and antibiotics etc. You all know how is it.

Anyway did my first menopur last night and it was fine.

Then today I get a call from the hospital waiting list to get laproscopy done on Wednesday 18th Jan! I’ve been waiting over 12 months and it’s typical I got the phone call the day after starting.

Just a bit of background incase. Secondary infertility since a MMC at 19 weeks - since July 2021 brown spotting issue before period from 7dpo. Had 6 medicated cycles of clomid and cyclogest. This stopped the brown spotting but I didn’t get pregnant. Literally cannot figure where brown spotting is coming from! All bloods appear fine and hyterscopy fine. Lap was one of the last exploratory parts for me.

My head has just gone but I’m thinking I obviously have to continue with the IVF cycle and if this one fails maybe call the hospital back to have the procedure but then I don’t know how long I’d be waiting again.

What are the chances :( literally the day after I start. If I didn’t have the brown spotting I wouldn’t be overly bothered about the lap but I almost want to know a reason for it if it’s endo or fibroids etc. like I said the cyclogest completely stops it but I’m just on a downer now if anyone can help :(

xx

The brown spotting started the month I had the covid vaccine too which is odd: but 6/7 month after having actual covid. Kind of think are my eggs ruined this is why I’m having brown spotting 😞

@Enfys23 oh no! That is such annoying timing. Would they let you pay for an extra scan earlier on so you're covering all bases? Or pay for one earlier at a medical scanning place instead? If I guess if ovulation tests work for you you could do those and ring your clinic is you get an early surge and try and move things.

@Loz2467 agh. That is very unlucky timing. What did they say on the phone when you said you couldn't do it this month? You won't go back to the end of the waiting list, so you'll probably be offered another appt soon, possibly too soon again. Some hospitals I think give you two chances for an op but you can't keep postponing, but it may be different for fertility stuff, seeing as it is dependent on cycles and people doing fertility treatment.

@Loz2467 oh dear so you've got a tooth abscess and then this surgery timing, you have only just started the cycle so if you wanted to do the surgery you can easily abandon and pursue the surgery and start again when you've recovered, equally you should be able to say you can't do that date and pursue your cycle and hopefully you're near the top of the list and will get another date soon. It sounds like you've been offered a cancellation.

I've had a really busy day today of appointments. I need some advice from the surgery/adhesions/Ashermans perspective. I had the saline scan and there was a distensible, flimsy shred of endometrium. He tried to flush it out in case it was left over from my period which he was unable to do, I am CD7 and stopped bleeding several days ago. He said it is attached to the anterior wall, when the fibroids were removed from the posterior wall and upper uterus. So what do I do now, he said just leave it and see if you have another chemical but I have one excellent euploid and one poor, I don't want to just chuck in the only excellent embryo I'll ever use in myself, I also don't want another operation. I've attached the image, it's clearly very obvious, it seems to be attached on one end and floating in the uterus on the other end, rather than attached to both sides of the uterus and pulling it together.

Who did the saline scan today @Gardenlady543 ? That makes me really angry that someone can be so flippant about pregnancy loss. Yes chemical pregnancies are early but it still had potential.

Can you have a hysteroscopy to remove it? I wouldn't feel comfortable transferring with it still there. Especially as they said another loss is possible.

Ps ive not forgotten about the podcast, will try and listen soon.

I'm struggling to keep up with everyone's news and updates. @StillTrying10000 I'm so pleased your little one is here safe, albeit early and with some worries. But I'm pleased to hear her kidneys are OK. When I was last at clinic Geri mentioned that drug.

I thought I was doing ok not ttc and on the whole I am and I'm ok with life childfree. But I was watching 24 hours in A&E this week and this sweet older couple were on. She lost her husband and was saying how their married life had been and how they'd wanted children and it just didn't happen. I was telling my dh when he got home and I couldn't even talk through tears. Shocked me really. But we're got the dna frag follow up next week. I'm going to gym classes and really enjoying those. I'm spending less time on my phone and even watching TV, it's definitely a good thing for me.

Sorry not to tag everyone but I'm thinking of you all, lots of love xxx ❤️

@VenusStarr thanks :) I know you know a lot about this stuff, I don't know if this is something I shouldn't worry about or if I need to have an intervention. I ended up sending the image to the company Mr Trew works for and asked if they can pass on the message and image so he can advise if I need a follow up to discuss, I'm sure he will know what's best to do. I don't want to waste my best euploid, but I also don't want surgery if I can avoid it, especially after the open surgery :(

We ended up not completing the whole scan as the catheter came out before the right tube was checked and I was asked if I wanted to have the speculum back in again to reinsert the catheter and I said no. I'm bleeding from the procedure now. I've had enough of these painful procedures now.

The weird thing is the fibroids were on the back wall and top and this is the front wall. So I don't get why this flimsy bit is floating around here.

Sorry to hear you've been upset, I feel like this as well, there was someone on the great interior design challenge who had unsuccessful fertility treatment and how they felt it took everything out of them and how getting to the end of the competition had helped boost them up. So many complex emotions :(

You definitely don't want to feel like you're wasting a precious embryo ❤️ a second opinion is a good idea. Hopefully you'll hear back soon.

I totally resonate with what you're saying about being prodded and poked. I got to a point where I just completely disassociated. X

@Gardenlady543 forgot to tag you!

@VenusStarr the part of the scan that wasn't finished was checking one of the tubes and I just thought, there haven't been tube issues before I'll leave it. I think in the past I would have said ok go again, but putting the speculum in and whatever they do to the cervix, it's so uncomfortably. My friend said she dissociates, she looks at the ceiling and pretends it's happening to someone else. I feel bad that I didn't let them do more but they were infusing loads of fluid to try and get the bit of endometrium out it was hurting and I just had enough in the end, I didn't want to have the cervix pain again to check a tube that a surgeon looked at 4 months ago. Then I thought about the chemical and could it have been an ectopic, should I have had them look.

I think it must have been quite invasive today as I'm getting bloody discharge, I was going to think about trying naturally this cycle but there is probably an infection risk after this scan. They've given me some antibiotics, so I probably need to take them and just relax, especially as I'm still getting symptoms.

I'm really hoping that this is a bit of endometrium that was snagged by the catheter going in or something and nothing to worry about, I don't know how I'll feel if I have to go through more surgery, I've only just had a huge operation.

@Gardenlady543 oh bloody hell! I wouldn't want to transfer a precious embryo without the second opinion, so it's the right decision to seek Mr Trew's opinion. I know what you mean about the having enough of being painfully prodded. I am so polite while it's happening but I just want to say "fuck off with that".

@VenusStarr sometimes the grief just comes out of the blue and it feels like being hit by a bus. Sorry you've been hit by it again. I hope the dna frag appt next week is helpful.

You're right about that @seven201 I have just been in tears on the phone to my sister. I'm in a group chat and there's been a few messages about one of their children's birthday parties soon. One has children from different dads so wont have them and said can I come childfree? (Well, I'm assuming so as I'm in the group and had the invite 🙄) and then she goes on to say she lives for childfree moments and then the rest commented 🤣🤣 I initially wasn't upset but showed dh yesterday and he was upset and wanted me to put a reply. But I left it. But now I've done the mature thing and just left the group...

Thanks @seven201 so glad I have you and @VenusStarr to ask about this stuff. I'm really hoping this turns out to be nothing, I hope Mr Trew can reassure me as I really trust his opinion. I know you both know what it's like to constantly face this, I know it's there and better that I know, but its not the start of the journey, at the start it's good to have an explanation. Now it's a case of I just want things to look normal for once :(

I'm sorry @VenusStarr hug from a fellow child free person, that is good that you left the group. I am so strict with protecting myself. It's hard being exposed to this stuff, you did the right thing leaving. Have you got anything nice planned to look forward to, I say this while I'm now looking forward to anything and very honest about it! You know someone at work asked me "did you have a good Xmas?" Obviously I didn't since I implanted for the first time and had a chemical, they don't know that though, so I sternly said "NO", I think they saw I booked leave for yesterday so they said, "do you have anything nice planned for time off work" I sternly said "NO" again. Yesterday I spoke to an endocrinologist, my fertility specialist and then had my uterus filled with saline, I think this is the opposite of a nice day! It's so empowering to pull a face and angrily say NO when people try to make you act positively!

How's everyone else doing?

@VenusStarr I’m sorry you’re feeling bad, you sound like me tbh. I’ve been having a lot of panicky thoughts lately about what if something happens to me or dh, what if we don’t grow old together, what it what if. It’s a horrible place to be.

Leaving the group chat sounds like a good plan. I’m very lucky (?) not to have any like that, I get to avoid all that chatter.

@Gardenlady543 sorry that’s happened, it’s so shit what we all have to endure. Try to relax and take the antibiotics, I’m sure it’ll be ok. I hate invasive things, the hycosy was the worst thing I’ve done so far and I do try to avoid invasive wherever possible. Luckily my clinic will do NK cells via bloods, not biopsy. Which endo did you chat to in the end?

We now have two appointments with the nhs for DH, with urology in January and a joint one with ivf and andrology in February. So we’re super confused about what all these are/how they came to be. We expected just one with andrology. Anyway! I guess we’ll go to both? My ivf doctor sent a letter outlining the plan for the next cycle, they’ll try me on menopur instead of Gonal f but that’s a way away yet. DH has to have another wisdom tooth removed yet so the sperm are about to get wrecked again.

I was reading about Rhod Gilbert having cancer this morning. This was after he had a stroke and infertility. I know everyone’s different but with male factor I always worry something is causing it, especially when I read stuff like that, but they won’t look into what. We’ll see what the tests bring I suppose in Jan/Feb but it’s always there at the back of my mind.

I’d also like to lodge a complaint lmao. Since my chemical in October OR possibly since the IVF the month after, I’ve developed period cramps. I never got them before and it’s bugging me. I’m kinda hoping the chemical caused it and not the IVF cycle.

@thislittlebird it is so sad about Rhod Gilbert, his documentary on MFI was really good and he was so honest putting himself out there, he's always so positive, I hope he's ok.

I ended up seeing a completely different endocrinologist that specialises in thyroids remotely yesterday. I was so distracted by all the stuff that happened yesterday with the saline scan. But the thyroid is quite interesting. He doesn't think I have hashimotos, in March 2022 I unexpectedly had a TSH of 12.1 and was started on a full treatment dose of levothyroxine, after 6 doses I was in range, he said that doesn't happen with hashimotos, I only have the thyroglobulin autoantibodies and not the peroxidase, and the thyroglobulin autoantibodies were very high, then half the amount 4 months later and when I just tested them, they are now normal. I asked if the steroids may have suppressed them and he said theoretically. But in his opinion he thinks this is more likely to be a transient thyroiditis, that I'm genetically susceptible and that the hormones of IVF triggered it. I've seen that people often get raised thyroglobulin autoantibodies with thyroiditis and they then reduce and often normalise. That would suit me, as I would rather not be on medication for the rest of my life. It also makes sense because in mid 2021 I was in a FET, my estradiol went up to 8000 and I had uncontrollable anxiety, I think I released all my thyroid hormones then and struggled along after. He was annoyed that my clinic didn't bother checking the thyroglobulin autoantibody in March 2021 when I had an autoantibody screen as he says if it was normal, which he expects it would have been, that would pretty much confirm that I don't have hashimotos. He said if I wasn't doing all the IVF he would try and wean me off the levothyroxine, but thinks I should stay on it as I need very tight control and said the dose reduction is sensible. I also felt him to be non-judgemental, I kind of expected him to say stop all this immune stuff, but when I said I'm worried about the impact of the immune stuff on the thyroid and keeping that stable, he said "well it sounds like you need to stay on it." He doesn't think the symptoms I'm getting are the thyroid and thinks it's the other meds, I'm almost off prednisolone now, so will need to see how I get on over the next few weeks. He gave me some good advise, saying in the first 14 weeks if I get pregnant I need to keep tight TFT control but after that the baby manages the thyroid itself, then it's after birth that I'm at risk as he said I'm at a high risk of post partum thyroditis with this history.

Hi everyone,
Looking for help after failed donor egg transfer 2 era- one BV other strep but receptivity ok. I've taken antibiotics and now getting UTIs often. Taking probiotics folic acid usual supplements but losing hope at this stage I'm 40+
Any success stories similar or tips! Thanks

Hi @Endure100 sorting out the microbiome is a good idea, I had two abnormal EMMA results before I managed to clear it. I did a menstrual fluid microbiome test for the third test as the biopsies were a lot of effort. How many transfers have you had? A lot of us have gone down the reproductive immunology route here.

Hi @Gardenlady543
Thanks forbthe reply. Was the 3rd one clear for you? Do you mean NK cells for the immune tests? It was one pgs tested embryo but dont want to waste anymore

@Endure100 yes third one was clear, so now I keep an eye on the pH and regularly use probiotics and vaginal acid products I wrote this about the microbiome https://www.reddit.com/r/infertility/comments/rwsxwy/theuterineemicrobiomeemmaaliceemenstrualfluid/?utmmsource=share&utmmedium=iossapp&utm_name=iossmf
I've had quite a few immune tests, there's so much they can test. Usually they don't pursue this until they have tested for a lot of other things. My initial tests were a HSG, autoimmune screen, thrombophilia screen, routine blood tests, ERA EMMA ALICE, I'm not too keen on the ERA, but since yours was receptive you don't need to worry about that.