ERA EMMA ALICE testing thread 7

[VenusStarr]

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

I am so sorry @thislittlebird that's very upsetting and frustrating that they're just ploughing ahead and not listening to your concerns. I hope Wednesday brings clarity for you. Sending love ❤️

@2021ivfagain I'm sorry you have all this going on and are upset. I don't know much about your situation, but think @Gardenlady543 's suggestion is good. I hope you can get things under control.

How are you @Gardenlady543 ? Hope you're feeling OK ahead of tomorrow.

Hope you're OK @CailinInUK

Are you having a scan this week @seven201 ? Hope things are OK with you

@Faithhopelove83 ❤️❤️

I'm just waiting to hear back about a scan next week. Was hoping for Tuesday, which would be day 11. We were due to go away for our anniversary next week but have cancelled as dh doesn't think he'll be able to eat the food. But we're keeping the leave anyway. Hope everyone is ok x

@Gardenlady543 Hope your scan goes well.

I have had tests for BV. I never get it but either have gardnerella and/or atopobium vaginae. I had a test done recently and clear of gardnerella and BV, but they did not mention about atopobium vaginae. I have been told atopobium vaginae can lead to BV and it is linked but not the same thing.

I live in Plymouth so the place you mentioned is probably in London. The issue is every swab I have says everything is normal apart from Invivo and twice with Home Diagnostics when I had gardnerella.

Do you know if fluomizin wipes out lactobacillus completely?

I don't know @2021ivfagain but I mean if you think you're at the worse case scenario then I don't think it really matters, you will just have to recolonize after.

@thislittlebird that makes sense, my friend who has DOR was under a specialist that used to bring her in early every cycle and they would only start with a good baseline AFC, which it doesn't sound like you have this time. So if you did abandon you could book an earlier scan next time then you could decide whether to start before beginning any stims.

@thislittlebird I feel your frustration and disappointment here. Such luck of the draw it seems with stims how the same protocl may work in completely different ways form one cycle to the other is crazy and doesn't make this journey any easier. I hope your follicles catch-up (I hear it happens to some?) or that they can nail the right protocol for the next cycle.

@Gardenlady543 the situation with your job on top of everything else sounds very disheartening and uncalled for. Like you aren't already worried enough about your future, this really needed to happen right now? I hope you can find ways to still find reward and satisfaction form your job in spite of this very ill-timed situation.

@VenusStarr really sorry to hear your husband is in pain and you're not out of the tunnel yet, I hope he can get seen and his issues properly resolved once and for all as soon as possible.

@2021ivfagainregarding the probiotic advice from CRGH I find myself in a similar boat, albeit with a different consultant and slightly different situation. There is no sign of infections or bad bacteria, however my lactobacillus is frighteningly low it seems at just 15% (!!), it might be to do with the doxycycline they had me taking for the EC cycle less than 3 months before the EMMA test, bit I did find it odd, given quite how low it is, that they'd only prescribe me 14 days of vaginal probiotics and that's it. No dietary or lifestyle advice and no recommendations for oral probiotics either. I'd have thought they'd at least recommend I took Gyno-Canesfloor for longer than 2 weeks, I mean you cannot over-do good bacterias, right, can you? It seems it's almost impossible for everything to be perfect by the time a transfer is due is it? You post-pone to get one thing under control or to check something and then something else crops up that needs fixing, but cannot be quite fixed before disturbing something else. I feel like things will never be perfect for me to proceed to a transfer at this rate.

@clhiu it happens to some yeah, I don’t think it will happen for me, just based on previous cycles where nothing much changes after the first scan.

@Gardenlady543 weirdly I tend to have a lot of follicles at baseline but much fewer than baseline number grow. I didn’t ask how many I had today, because it doesn’t matter really if they aren’t growing, only the one was active. I can have 25-30 and only 15 grow. I just can’t really get over how bad my private cycles have been. I was in shock walking out of the clinic when it sunk in that there was only one.

@VenusStarr thanks, I don’t want to abandon because it means I can’t drink on holiday if we go ahead next month. Which is sort of crap, since I’m only 40 once and probably won’t be pregnant. Sigh.

They emailed me today at midday to say start Fyremadel tonight, a day early. That one follicle is getting ready to pop 🫠. I had more with bloody letrozole lol

I can't remember what letrozole is used for in an ivf cycle, can anyone remind me? I remember at one time I was considering asking them about adding it in but can't recall what for.

Hi @thislittlebird would it be for fsh, instead of (or as well as) injectable fsh? I'm supposed to be on gonal f as well as letrozole for superovulation but couldn't get hold of it.
I was going to ask if you could convert to timed sex or iui if you still only have a follicle on Wednesday?

@VenusStarr i don’t remember it being for that, it’s really bugging me. Will have to Google my username and letrozole lol.

There’s no point converting really, the antibodies will attack his sperm so it’s all pointless without intervention. I’m so annoyed right now, I just wish I felt like I had a doctor who listened.

It's bugging me too now @thislittlebird let me know when you find out!
What's the plan for dealing with the sperm antibodies, do they treat his sample?

@VenusStarr i found it. You can have letrozole and a trigger in a FET cycle instead of a medicated cycle. I found myself yapping about it to one of the many people I’ve encountered on here who Ivf actually worked for 🤪

You can’t deal with them apparently, they just discharged dh and off we went back to ivf. All they can do is prep the sperm as near to EC as possible. It’s pretty depressing.

This might be a stupid suggestion but could you convert to iui and they could prepare the sperm in the same way, or would it only work in icsi? @thislittlebird

Glad you found how it's used, so similar to low dose stims c

@thislittlebird letrozole recruits more follicles, usually people get 2 or 3, I was out on it to try and add more natural hormones into my FET, but t didn't really work for me after I stopped it the 5-6 follicles it recruited turned in to one and more recently none. But had I been on higher dose stims they wouldn't have gone. My friend with DOR used to be put on it in her collection cycles to try and get more follicles at baseline, she would start with a AFC of 2-4, but often had less than that so wouldn't take stims in those cycles, she had bad side effects so couldn't keep taking it. Loads of us here are on it and manage fine though.

@Gardenlady543 your follicles turned into one? yeah I had it for OI in the past and was fine, had 2-3 follicles each month. So for me it was something to suggest during those heady days when I had frozen embryos to transfer in FET cycles. It’s not relevant now so much but I couldn’t recall why I had planned on asking about it at some point.

@VenusStarr I don’t think they could convert because the sperm are useless thanks to the antibodies beating them up so as soon as they were sent on their way they’d just be under attack. That’s my understanding, anyway.

Oh, I think I get it. A bit like nk cells in a way. I hope you're OK @thislittlebird it's really shit x

@VenusStarr yeah, super shit. I just feel a bit shocked really. We can’t work out how we went from a good cycle and optimism a year ago to this feeling that nothing will ever work. It’s all so unpredictable and frankly, bad. My clinic aren’t making me feel very reassured either, just one line replies with zero pleasantries from my consultant. It feels very lonely and honestly I can’t help thinking it’s a ~sign~ that I should just give up. It’s not for us, walk away. I know signs are not real, I just can’t make sense of why it never works for us and it does for most other people.

Yeah I had it twice in modified natural FET, the first time the follicles just became one leading follicle and they started an antagonist and the lining stopped growing. The second time the antagonist was added before there was a leading one and everything disappeared. I think it's used the same in IUI, timed intercourse and modified natural FET, you just take it for a few days at the start of the cycle. We've decided not to do it anymore and will just go with low dose stims in modified natural FET, but I couldn't start last week due to the follicle/cyst.

@thislittlebird have you seen anyone outside your clinic? I got a written second opinion from CHR and then saw Dr Gorgy.

Had the scan, the nurse thought the follicle/cyst now looks like a corpus luteum, which is what was expected. Although there does appear to be a follicle in it, she said that it could be because we are looking at something in 3-D and it's actually next to it, but it did look in it last time as well, so I don't know what that is. There was a 8mm follicle on the left which was a bit concerning as that could grow and cause an issue, but she doesn't think it will grow as they ignore anything under 10 mm. The lining was 5.3 mm, which is good because it was 3 mm and I was actively bleeding when I triggered so at least I've produced a tiny bit of lining, which means I hopefully should get a period. Expecting the period a week on Saturday now, which will hopefully be the start date for the FET.

@thislittlebird ❤️ is this your last cycle with your current clinic? It's horrible that you don't feel they're on your side and can be trusted.
I think when you're always on the side of things not working out, or always getting the bad news, it leaves you feeling flat. I don't have any hope of it working for us anymore. I think I've just accepted it now whereas it used to make me so upset. Sorry, I'm not helping but just know you're not alone in the way you're feeling.

@Gardenlady543 glad you've had your scan and the trigger looks to have done what it needed to 🤞 for your next bleed and to no hurdles next cycle x

@thislittlebird it's hard when things keep going crap, tbh I really can't face thinking ahead too much as my anxiety goes through roof and I have to take each day at a time so I don't meltdown. Sending hugs
@Gardenlady543 that's good, hopefully will go to plan a bit more now

I've got EC tomorrow and dreading it even rough it's my third as its always so painful, they give piddly doses of midazolam and painkiller, most people are ok but with my endo pcos ibs its excruciating. I'm sure they think I've got a low pain threshold and play it up a bit even though I say I have a high one as I have chronic pain,bad periods, migraines etc. It was sore just having vaginal ultrasound yesterday.....

All the best for tomorrow @kerrym87 I'm sorry that egg collection is painful for you. I really hope it's not awful tomorrow. Honestly, it's ridiculous that women's gynae procedures are done with little pain relief or care for how it feels. Makes me so angry.

I'm panicking that I'm just not going to respond to letrozole again. Got my scan next Tuesday which is cycle day 11 which on paper should be fine as I usually ovulate on day 10. But my first go was day 16 and my second was day 21... really can't afford to go for 2 scans again 😒 any tips on getting my follicles to grow? Feel like I've forgotten everything.

@clhiu It is scary. I wasn’t even given that much information at CRGH. They did not give me the pie charts. I was told they don’t always have them, but I’m certain the sample was not big enough. I was just told my lactobacillus was ultra low and I had some sort of dysbiotic infection. They just recommended 10 days of vaginal probiotics but consultant recommended more. Doxycycline can mess up gut bacteria as well.

I thought I was going to do transfer this month but does not give me long to put probiotics in. I could take them twice a day. I never like taking antibiotics when doing oestrogen priming as I read it can lessen the effects.

I’m worried about my fsh as each month it feels harder to suppress. My nutritionist just agreed with what I was deciding. She did not know much about fluomizin.

All my recent tests have come back no bv, no gardnerella but I do have atopobium vaginae which is associated with bv but not actually bv. At present, I still have bad discharge but I’m delaying period so ph changes then.

Do you have symptoms?

I think I will be taking vaginal probiotics after transfer but need to determine when. As these are my last embryos, I don’t want to make a mistake. I’m taking probiotics at present. I’ll start antibiotics and then decide when to do transfer. This time I’m taking vaginal probiotics with canesbalance during antibiotics. Then canesbalance with 2 vaginal probiotics a day (one morning one evening).

Hi @VenusStarr , just want to say thank you again for yesterday, you helped me so much. The trauma of previous losses is still with me, but I had forgotten how hard this early stage is and it only gets harder each time. All is well though (I won't say more than that as I'm conscious what a rough time everyone is having), my Intralipids went well today and they have brought my scan forward to next week. Every day is going to be hard, but I just have to get through it. I so hope you get the response you're looking for this SO cycle and that your scan next week goes well x

@thislittlebird I'm so sorry your cycle is not going as you hoped and you're not getting the support you need from your clinic. It's so hard and draining enough, without being up against it with your clinic. Can you change Consultant at your clinic or raise a complaint? I think you previously mentioned you wanted to try Create - can you change to them or are you tied into a package? I really hope your cycle improves. Sending virtual hugs x

@Gardenlady543 So pleased to hear your scan went well today. Onwards and upwards from here hopefully x

@kerrym87 Wishing you all the very best with EC tomorrow. I hope you get a good anaesthetist who listens to your concerns. Will be thinking of you x

@thislittlebird when’s your next scan? I think you said you had a good AMH, is your AFC normally good too? If so, would you consider long protocol, which should prevent a lead follicle and get more even growth? Alternatively I heard that luteal phase stimulation gives even growth though I don’t have personal experience of that.

@VenusStarr I’m doing ok thanks. I should get my PGT-A and PGT-m results any day. I’m geared up for another cycle as highly unlikely I’ll have anything to transfer. I’ll go for a scan in a couple of weeks around Day 21 to check my AFC prior to down reg.
I don’t have any experience of letrozole. Could you use stims to superovulate, or are you doing that too anyway?

@Gardenlady543 roll on a week on Saturday. I hope it passes fast and Easter will help that.

keep going @Faithhopelove83. Take it one day at a time. I’m both desperate and terrified to have opportunity of another transfer.

good luck for tomorrow @kerrym87 . So Sorry it’s painful, I hope this is your last time going through it.

Hi everyone, just trying to catch up, been hectic at work on my return.

@2021ivfagainI have unfortunately had lining issues even in my fresh transfer cycles, that’s why I was wondering if adding neupogen during stims might help me. I don’t know if the high dose FSH might have affected things as my body was definitely stressed out by the drugs, I felt bad. I’m sorry things are so difficult for you right now too with the microbiome issues. Thanks for the info @VenusStarr . Hope DH gets seen soon. You’ve had so much to cope with.

@Gardenlady543 glad there was some progress on the scan. Cross fingers all goes smoothly to try again next cycle now.

@kerrym87 thinking of you tomorrow. You’re the one who knows your body, your case best and the only one who’ll really advocate for yourself, so make sure they know and listen xx

@Faithhopelove83 sending ❤️

@CailinInUK hope all goes well with the PGT results, keeping everything crossed

@thislittlebird I am so sorry to hear this. It definitely sounds like demanding a second opinion here is warranted. You cannot feel like this about your treatment, it’s hard enough as it is.

I’ve had my results for hormone panel back yesterday. My AMH hasn’t plummeted too much being 5.58 pmol/l now (6.1 before), so low but still technically normal for age. My FSH is 7.4 with oestradiol 140 which seems ok for day 3, though I’m guessing could be better. Testosterone is low though 0.09 nmol/l - I wonder if this means I’d benefit from DHEA. My free androgen index was very lower end of normal at 0.3. Looks like low testosterone is a thing in DOR. My Thyroid hormones were good on meds but my thyroglobulin antibodies are high - not surprising I guess as I’m quite atopic/autoimmuney and known to have under active thyroid. I have only ever had TPO antibodies checked before and they have always been normal. It’s more info and maybe a help with planning stims and looking further at immune issues?