Didn't make it to test day - advice

[VenusStarr]

I've just finished my first ivf round, 5 day transfer with a 5AA embryo. I'm on prednisolone, clexane, intralipids, aspirin, utrogestan and hydroxychloroquine and had a scratch before starting the cycle and it looks like my period has arrived at 8dp5dt, I have a beta blood test tomorrow but I'm almost certain this is not going to end in a bfp. I've been advised to stop the aspirin and clexane for now.

The round went much better than we predicted and we have 2x 3AA frosties - despite low amh, 3 fertilised and made it to day 5. I'm just trying to think about what we can do differently in a FET. I had my progesterone tested 2 days after transfer and it was 56, so they were happy with my levels.

Are there any questions we should be asking our consultant at our review appointment? I'm confused as to why my period arrived when I'm on 600mg of progesterone.

Thanks x

[Betsyboo87]

Sorry to read that af arrived. Regarding the progesterone, I was given it to take during my LP in the early days of investigations. I had slightly low progesterone and LP spotting. I’m sure it was 3x200mg of utrogestan I was taking and AF would still arrive each month. My gynae said that was normal and just to stop taking it when AF arrived.

[Gardenlady543]

@VenusStarr I'm really sorry to hear this, my period started at 8dp5dt in my fresh cycle. I classified this as early bleeding but a specialist said this is normal as it's the equivalent of 14dpo. In my FET which was also unsuccessful I didn't bleed, I think the estradiol I was taking held it off.

How old are you out of interest. And was this your first transfer?

It could have been an aneuploid embryo and so just unlucky. On average the chance of a cycle working is around 1 in 3, so we need to expect to go through 3 transfers for a good outcome.

It sounds like you're on a lot of meds, I guess the next things to think about are:

• Do you want to Pgt-A test the embryos? This won't increase the chances of it working but can help people get there quicker if there are a lot of embryos available. There are disadvantages: embryos can be damaged and when I had it done my best didn't survive the thaw. You may want to consider not PGT-a testing but to do a double transfer next time instead given you've got 2 frosties.

• Is it worth doing a ERA EMMA ALICE, this was the only test that seems to explain why I've never had a BFP. My microflora was awful and it is easy to fix. I was also found to be prereceptive.

I think what you do next depends on your situation. If you want to give these two embryos the best possible chance then I'd be inclined to do an ERA EMMA ALICE and then use that info and go for a double transfer next time.

[Scirocco]

@VenusStarr - I'm so sorry. Sending virtual hugs.

I wonder if endometrial receptivity and/or progesterone resistance might be worth exploring with your clinic, if you haven't already? There have been some interesting threads on this forum about endometrial receptivity analysis and investigations including checks of the endometrial bacteria.

[Gardenlady543]

@Scirocco what does progesterone resistance testing involve? I didn't realise there were tests for this.

[FingersXssd83]

Hi @VenusStarr So sorry to read about your negative cycle. It's such an awful rollercoaster, the emotions can be overwhelming. Take your time processing everything, it can really knock you for six.

It sounds like your clinic are already being very thorough and you have had a fantastic first cycle. With your FETs, have faith in the process and trust your clinicians. They want to get you your BFP as soon as possible and will do all they can to get you there. I don't think there's anything else you need to do differently, but try and stay hopeful.

Bleeding before OTD on progesterone is normal, I have done this three times so I wouldn't be concerned about that.

It usually takes 3-4 cycles for the majority of ladies to get pregnant (it took me 3 cycles and 4 transfers of 7 embryos in total) and most ladies don't have anything to freeze, so you have an excellent chance of getting there much sooner than the rest.

Good luck!

[2mumlife]

@VenusStar My AF started 4dp5dt on fresh cycle whilst on progesterone (cyclogest). My clinic don't test progesterone levels and just said "it happens"

[2mumlife]

I also never made it to test day on any of my 4 IUI attempts either, AF always came a 1-3 days before OTD

[Scirocco]

@Gardenlady543 I'm not an expert in this field, but there's research showing downregulation of genes involved in progesterone responsiveness in gene expression microarray studies of endometrial tissue in endometriosis and chronic inflammation. In cases of resistance, a "normal" level might not be enough, but higher doses might help compensate? I'm not certain about investigation processes for it as I've never been investigated for it myself and it's not something I work with, but my basic understanding would be that people might try a somewhat empirically based approach, or look for proxy indicators of associated issues, or have gene analysis of endometrial tissue samples...?

The paper linked below (hopefully) (although it was published in 2017) also mentions some more specific interventions, but I'll emphasise that this is absolutely not my area of expertise and people should always consult their own healthcare provider!

httpss://obgyn.onlinelibrary.wiley.com/doi/10.1111/aogs.13156

[Gardenlady543]

@Scirocco oh thanks that's really interesting. The UK doesn't seem to explore silent endometriosis. In the USA they use the receptiva test but it seems really hard to get this in the UK.

I had an ERA that shows I'm pre receptive, I was quite happy with the result as I was worried it would come back to say it looked awful. I have progesterone hypersensitivity so I think my situation is complicated.

I might have to look into this further if things still don't work. I'm having a FET now after treating microflora issues and will be transferring at this altered implantation window and also on aspirin and heparin for the first time. So I hope it works.

[Porridgeislife]

You might want to ask some questions about your progesterone levels? 56 doesn’t seem that high. By comparison mine was 60 on the morning of transfer and my consultant was quite worried. I was on 2 x cyclogest and 1 x Lubion and they added another Lubion.

It went to over 100 the next morning and they were much happier. My FET wasn’t successful and I was on similar medications to you, but I also didn’t bleed until I stopped the medications. Some people need a lot of progesterone to maintain their levels.

[VenusStarr]

Thank you all for your replies @Gardenlady543 @2mumlife @Porridgeislife @Scirocco @FingersXssd83 @Betsyboo87 it's been a complete head🤯 day. I treated very faintly on a frer this morning (it looks like an 11/12dpo type line) but my hcg is 5.2 so the clinic have put us down as negative and to stop all meds. I don't know if this means that it did try to implant, but late.
They'll contact us for a review, so all your comments and suggestions are very helpful. I'm thinking lubion for progesterone - this round was nhs but our FETs will be self funded, so hoping we have a bit more say in the plans xx

[VenusStarr]

tested

[Janefx40]

Hi @VenusStarr I'm so sorry that the cycle hasn't worked out. I remember you from various threads over the years and had seen your other thread and had everything crossed for you.

My first thought as @Porridgeislife mentioned is that 56 isn't that high for progesterone. My clinic like it to be over 100 but actually if it dips below 200 they usually add more (they are massively over the top tho!). Having said that, for most women, if you had had a healthy implantation the embryo should have produced enough to keep you going. Of course IVFers aren't "most women". Lubion is really expensive btw (around £7 per shot and most women are on 3 a day). I use it because I prefer it but other women at my clinic use prontogest which is cheaper and just one shot a day. Prontogest is super painful tho which is why I switched.

I realise you said you can only do FET moving forwards but if you were doi Neg another fresh round, the other thing is to ask why you only had 3 follicles. We are often told that is just down to age/AMH/AFC and it may well be true but worth finding out more. Do you know what your stats were at the beginning? What protocol were you on? I recently had a consultation at a new clinic and they suggested putting me on a long protocol (always been on short before). They said this could give the smaller follicles more opportunity to develop alongside the larger and hopefully get more.

Also what was your FSH? Could you take something to lower it, if needed? Again only relevant for a fresh cycle.

None of these questions may be relevant to you and ultimately a lot of it comes down to our ability to produce fertile embryos but there are ways to produce "marginal gains" that can make the difference.

I have been there though with a chemical after IVF and it was an awful time so am sending you lots of love xxx

[VenusStarr]

Hi @Janefx40 thanks for messaging. We are open to doing more ivf rounds but I think we wanted to try a FET first.

I have an amh of 5, my afc was 8 and I did end up with 7 eggs collected which was a surprise but 4 didn't do anything (might be an explanation of why we do struggle to conceive?) But in my scans there were really only 3 in the running. They did push me over the weekend, so I was triggered when my top 2 were 21mm and the third was 15mm, my others were 10-12mm. I was on mild stimulation with 255 bemfola. I'm with Create, so don't think they do long protocol. My egg quality was excellent according to the embryologist and the embryos we got were 5AA and the frozen are 3AA. My fsh is 5 and my lh is 2, which I think is OK?

Interesting about the progesterone levels, I'll definitely ask more about that. The nurse definitely said it was perfect 🤷🏻‍♀️

I hope you're doing OK, are you doing ivf at the moment? Xx

[Janefx40]

@VenusStarr oh yes definitely makes sense to do FET before you consider anything else.

Yes for an AMH of 5 to get 7 eggs (3 good) isn't unusual. Your FSH and LH sound good. Create is a good clinic so should know what they are doing. It's frustrating that they made you wait over the weekend but that is unlikely to have made the difference anyway as those smaller follicles would have been even smaller before. It was probably the 3 larger ones that fertilised.

As far as I'm aware there is no way for an embryologist to know whether your egg quality is good or not. They can know whether they are mature and fertilise but egg quality is one of those things that you can only ultimately tell from how the embryos develop (and even then it is hard to know). There are diets etc that people follow but ultimately we can't do too much about egg quality. We just have to eat well and hope for the best.

I'm not particularly advocating a long protocol and actually have chosen a different clinic who won't be doing that. I felt nervous about changing because I've had a reasonable result for my age and stats on short protocols.

Regarding immunes I'm no expert. My previous clinic ARGC do a lot of immune testing and treatment but I'm aware this is controversial not to mention painfully expensive. In London there is also Dr Shehata and Dr Gorgy who both specialise in immunes though again both expensive and the treatment is controversial but lots of women spare by it. I know there are also specialists in other areas but I don't know them

Xxx

[SpyroC]

Hi @VenusStarr sorry it didn't work out for you. I also have AMH of 5 & got 7 eggs on round 1. Sadly my first round failed too as did my 2nd but round 3 was the one. 1st time was 800mg cyclogest, I had my usual endo pain and spotting before my otd so round 2 I added in lubion every 3 days & the same thing happened. Round 3 they increased the lubion to daily. Round 2 my progesterone level was deemed low (can't remember exactly...mid 40s I think). Thinking around this varies wildly and the evidence is inconclusive. I just had a feeling from round 1 that my progesterone was off. Some ladies just don't seem to absorb the pessaries/ gel very well. Me & DH believe progesterone was a factor in our success though as it worked we will never know if it truly is what made the difference as we tweaked a few things each round. It's a minefield isn't it! My advice would be to do your research and find a Dr you feel is listening. I remember one consultant at my clinic saying that if I asked 10 Drs I'd get 10 different answers. I appreciated this honesty and his willingness to be open to ideas. I also found some Drs to be more up on the latest research than others. Best of luck x

[VenusStarr]

Thank you for your replies @Janefx40 @SpyroC things have got complicated as it's my official test day (with urine) and I'm testing positive on both free and a boots 25miu test but the clinic were certain on Monday that with my hcg so low that the cycle had failed. I'm waiting for a call back.

I'm under Dr Shehata @Janefx40 he feels our subfertility issues are due to my ml cells but we've tried ttc naturally for 6 months on the plan and couldn't conceive so did ivf.

Interesting about the progesterone @SpyroC I used cyclogest in my 4th pregnancy and still had a bleed on it when things started to go wrong.

I'm in complete limbo at the moment, no idea what to think x

[VenusStarr]

Sorry for the spelling mistakes! Frer and nk cells!

[Janefx40]

@VenusStarr oooo. How are you feeling about it all?

ARGC do endless Hcg testing so between all the women on the FB group there is a lot of detailed experience of Hcg levels. There are a couple of women who had numbers as low as 5 at 10dp5dt who went on to have healthy pregnancies. Of course there are also many others that didn't (myself included). I don't want to give you false hope but it can work out. I know when I am in these situations, I spend hours trawling the Internet for positive stories so I hope that is helpful to hear but apologies if not.

What is the next step? Xxx

[VenusStarr]

I'm scared @Janefx40 this is my 5th pregnancy and I've bled a lot. I definitely passed some suspect tissue yesterday, so my gut feeling is this isn't good. But there is a tiny part of me that wants to be hopeful that it could work out. I like hearing good news stories, no doubt I'll end up down a Google rabbit hole today...!

I'm still waiting to hear from the clinic, I hope they retest my bloods. They just seemed so certain on Monday, failed cycle, that's it.

Interestingly I did the tests after an hour hold and they came up clearly. I only tested as I felt I needed to see the negative to put it to bed and now it's made my head like this 🤯 xx

[Janefx40]

@VenusStarr I'm so sorry you're in a confusing situation. You may well be right that this isn't looking good. On the other hand it could still work out. There is no real way of knowing other than time and that is very hard.

With my chemical (my first ever IVF cycle) I tested at around Hcg 6 on 10dp5dt then my Hcg rose slowly up to around 80 before it started to drop again. The whole process lasted about 7-10 days. I really struggled. I was sort of ok (sad but ok) when I thought it just hadn't worked but when the Hcg started rising it was a total headscramble.

I'm not sure how Dr S works but at ARGC they would potentially call you in for immune stuff in this situation. Is it worth contacting his office too?

Xxx

[VenusStarr]

Thank you @Janefx40 it is the being in limbo part and having to wait that is so hard. I just thought it would be a yes or no. We'd got our heads around failure to implant, but this is just odd and unsettling.

I've messaged Dr Shehata'S clinic, they're not great at answering the phone! I'm their eyes a positive is positive, he doesn't recihohcg levels or test them. So on theory I should be going to get intralipids now, but I'm reluctant to travel down (it's a 6hr round trip), pay £350 for the privilege and it be a chemical but then on the other hand, if there's a tiny chance of this working out, I'd do anything.

I'll give the ivf clinic until lunchtime and try them again xx

[SpyroC]

@VenusStarr I'm sorry to hear this. I just read back & see you are 11dp5dt. I can totally see why you are pessimistic but don't completely give up hope. My clinic took hcg5 at 13dp5dt as a positive but treated it with caution. You need them to repeat the test to see if the level is doubling every 2-3 days. That is what counts. My second round left me in limbo too. I accepted that it was all over however, always had a glimmer of hope. My clinic told me to continue with my cyclogest & lubion which I did until my hcg began to fall & it became obvious there was a problem. Push them to get you in for hcg testing today so you can get some clarity. The limbo is truly awful and I really feel for you. I hope your clinic support you. X

[VenusStarr]

The clinic have called and I'm going in for a blood test, I've missed the cut off for same day results though, so won't hear back until tomorrow. But I'm glad they're checking.

I'm sorry you've been through similar @SpyroC it's like you can't focus on anything else. My mind is racing. They've told me to restart progesterone, so I'll ask them to check my levels along with the hcg test too. But they need to speak with the doctor to check whether I should restart aspirin and clexane. I'm just faintly spotting now. X

[Janefx40]

@VenusStarr don't even try to focus on anything else today although if it is possible to distract yourself with some mindless TV then that could be good. It's all just about getting through the next few days.

Let us know how you get on (if that is helpful for you) x