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.

@Faithhopelove83 I got my bleed today so it's a baseline scan tomorrow to see if I can start. It's modified natural but no letrozole this time, just low dose stims. So will have to see how things go. Fingers crossed for OTD tomorrow.

@VenusStarr how are you doing, home time today still :) ?

@seven201 it's basically a treadmill but with no handle that goes under your desk and you can't run fast on it, it's for walking/power walking while working really. Started trying to use it and period pain so stopped!

Thank you @Gardenlady543 🙂. All the best with your baseline scan tomorrow. I'm glad you've got a plan and I hope you get the go-ahead tomorrow x

@Gardenlady543 weird, mine started today too and I’m waiting to see if baseline should be tomorrow or Friday. Probably Friday because it was light first thing.

@Faithhopelove83 we’re in year 4. I can imagine you’re a mixed bag, I hate testing and the only time it worked (briefly) for me, I sort of knew it had worked. Every other time I knew it hadn’t worked, 5 transfers in total including one double fresh of terrible quality embryos.

We decided to crack on while DH’s sperm had come back ok. Plan is 225 Gonal F starting soon (was supposed to be menopur but there’s a shortage), then clexane, Lubion, cyclogest, and a double trigger shot. Starting probiotics once my period is over too.

And I should add it’s natural modified.

Hope you’re enjoying your break @Faithhopelove83, just read you’re away right now

@thislittlebird oh that's exciting you're on the same timing. I haven't done a baseline scan before, the consultant wants to check the large follicles that I had on Cd8 last cycle aren't present at my baseline, which I mean I know the letrozole caused them as it was painful. And I know it was the addition of the fyremadel that caused everything to disappear!! They told me menopur is not being sold in the UK anymore and the alternative is Meriofert that only comes in 75 unit vials :(

@clhiu how did you get on at the appointment.

@VenusStarr I hope you are home and get to be tucked up in your own bed tonight, with one long well deserved lie in tomorrow!

@Faithhopelove83 good luck for tomorrow 🤞

Hi @Gardenlady543 thanks for checking in.

Apologies all for not keeping up with the thread and not being fully up to date with all your news, I hope things are proceeding positively for you all.

I spent the past few days being worried sick, the past few hours of today especially I’ve had intense anxiety symptoms. The appointment was with a specialist thyroid surgeon by the way, not an endocrinologist as was told lumps in that area need to be first assessed by that type of specialist first. Meanwhile my thyroid hormones bloods came back and they’re completely normal so the problem isn’t a thyroid imbalance as such. The surgeon was very lovely and reassuring that so called ‘colloid nudules’ are very common and almost always bening, he did a little drawing to show how they form and why around 50% of people have them and most of the time they don’t even realised. However he said I have to have an ultrasound with the right kind of specialist to fully rule out any malignancy, if any of the 3 nodules looks suspicious then they’ll have to do a needle biopsy there and then, but he was feeling pretty optimistic anyway. I have the ultrasound with the same clinic Friday morning and I keep picturing the worst case scenarios. If they have to do a biopsy it will be another 1-2 weeks of sheer panic while I wait for the result and definite cancellation of this cycle at least for this month. If that’s the case as long as the results are positive in the end I can bear waiting one extra month to start, but I’m concerned the validity of all the tests I just did may be less if I leave a month in between. Needless to say if they find something malignant that requires treatment I can probably say goodbye to ever transferring that embryo or having a child ever. Sorry for the massive downer, I’ve been feeling nothing but absolutely terrible for the w days thinking about all this 😞

Thanks for your kindness everyone. As is tradition ended up with horrible prolonged migraine with coming off meds.

@VenusStarr really hope you’re home safe in your own bed tonight.

@Faithhopelove83 thinking of you. Glad you’re able to enjoy a little break away.

@clhiu hope the appointment went well.

@Gardenlady543 @thislittlebird good luck with your new cycles. Hope the baseline scans go okay.

We've got a review appointment end of next week. In meantime we’d talked at last review after January’s failed transfer about getting karyotype for me and DH, and sperm dna fragmentation done (DH really keen on getting this done after hearing someone else talk about it) if this embryo didn’t stick, so those are now being done this week to speed things up hopefully. Otherwise think we’ve had all the other RIF tests they offer besides NK cell & TH1/TH2 stuff. I’m just not sure they offer this immune testing and treatment at my CARE clinic and not sure how it’ll work to travel as far as we’d have to as seems only true options are down south.

I’m keen to check my AMH and FSH/oestradiol etc too again before 3rd fresh cycle. Anyone know if a couple of weeks of pred would massively change things?

I’m sorry @clhiu our messages crossed paths. I’m sorry you’re having to go through all this, but try and remember, as hard as it is I know, that it’s much much more likely to be something benign, than anything that would lead to those worst case scenarios. Crossing everything you get positive news on Friday.

@clhiu I feel you, I have ended up at the breast clinic twice during IVF. The first time was when my estradiol was 8000 in a medicated FET, 10 times more than expected and my speiclaist mentioned "oestrogen producing tissue" eg breast cancer and I had breast changes in this cycle, after the cycle didn't work and I stopped meds my estradiol returned to normal and my breast changes went, but my gp has already referred me to the breast clinic so I went along and out of nowhere they found an abnormality and did a core biopsy, the breast clinic have a super fast turnaround and I was told I'd get the result in 3 days. The next day they called unexpectedly and I missed it and panicked like there was no tomorrow, but they were calling to ask if I'd do a video consultation as they thought I'd be good with the technology and I was like sure fine! Anyway all was good and it was over when the consultant spoke to me later in that week. Then I had a breast ultrasound scan routinely in January last year and it found a BIRAD 2 lesion and I ended up needing another scan to check it after 3 months, which I put off for ages and when I went they said they don't do ultrasound monitoring and did aspiration of the area and sent it to the lab and again it was ok. But the time waiting is so worrying. I think that overall while you are thinking of the worse case scenario as I was... all I could think was this will either be fine and I carry on with IVF or this is life changing and IVF is over forever and cancer treatment begins. However, your surgeon wouldn't have been so positive if there was an issue and this does seem to have sprung up quite quickly, which cancerous lesions don't tend to do. So I expect that you will get good news and this is all as a caution.

@Enfys23 the Karyotype and DNA fragmentation sounds like a plan. I think Care does do it, someone here had it done at Care. But then the interpretation and plan may be different than going to a RI.

Thank you @Enfys23 and really sorry to hear the transfer didn’t work, I hope you can have another go soon and this time it’s the one, but I know it’s hard to keep going after setbacks and disappointments.

@Gardenlady543 oh my! I had no idea you’ve been through all of this twice and in the middle of IVF. It sounds like a lot and I am really sorry to hear the stress it must have caused and the additional delays. It is really helpful to hear you’ve had a very similar experience and the steps you’ve been put through to eventually end up having a positive outcome. If I have to do a biopsy I will think of your story and try to keep calm that a negative outcome is still not certain at that point. I wish you hadn’t had to go through that, but reading about your experience is the first thing that somewhat calmed me down today. I hope this doesn’t come across weird. Thank you for sharing.

❤️ @clhiu my mum died of metastatic cancer of unknown primary when she was in her 40's, so any issue in me and doctors take it really seriously. This also means as I'm pumping all these drugs into me, that I'm constantly worrying about the impact they might be having, but there's nothing else I can do if I want a child.

Thank you @thislittlebird 🙂. I'm sorry you've had to go through so many transfers. I didn't mention that I did 3 IUI cycles previously (1 BFN, 2 BFP - MCs), so this is my 6th ART cycle. I'm sorry that you're having to change to Gonal-F instead of Menopur due to shortages - that must be worrying - how do you feel about it? I've not tried natural modified before - they put me on max stimms with Menopur and Ovaleap last time.

Thank you @Enfys23 🙂. I'm glad you've managed to get a review and sperm DNA frag tests arranged, that's good news. I'm with Care too and we got the sperm DNA frag tests and NK cells / immune tests through our clinic. I absolutely recommend both tests. If sperm DNA frag tests come back with an issue though, I recommend seeing Mr Ramsay and not relying on the clinic alone. Also would recommend ZyMot and ICSI in that instance. I'm on Intralipids and pred through our Care clinic now. I'm happy to answer any questions you may have x

@clhiu I'm sorry for the additional stress you're going through at the moment. Like @Gardenlady543 I too have had 2 breast lump scares during our time ttc. Both required urgent 2 week potential cancer referrals and 1 required a core biopsy. Thankfully they were both fine. I know it's a different thing with the neck, but the good news is they are investigating it quickly. I know it's hard but take courage from the fact that your specialist is not too concerned and the likelihood is it will be fine. I hope you get the all-clear and can proceed with your next cycle soon x

How are you doing @seven201 ? I think you were due another scan soon? Thinking of you x

Are you back safely @VenusStarr ?

I hope your baseline scan has gone well today @Gardenlady543

Hope everyone else is well x

So it's my OTD today and it's a BFP. So grateful to have got this far but conscious I've been here 3 times before - and I've got a long way to go (into second trimester) before I'll be beyond the furthest point I've got before - so it's very scary. I've got my 7 week scan booked and I'm trying to sort out my next lot of intralipids. We go home tomorrow and then it's back to work on Monday. Intralipids should be Tuesday.

@Gardenlady543 and @clhiu Sorry you’ve had these added stresses and worries.

I hope you both manage to do this cycle. I know the delays can be difficult and frustrating.

@Faithhopelove83 Did you transfer two untested embryos? Congratulations

I don’t know when I’ll be able to have a transfer. I did a swab on Tuesday and the lab received it on Wednesday. I should find out tomorrow. It feels like my infection has come back in the bum! The discharge is collecting in the bum. It’s really uncomfortable. I hope Home Diagnostics pick it up. I did two vaginal swabs! I just wanted to ask if you can use vaginal probiotics rectally as well? I’ve been reading about bv-related infections which can transfer to the bum area and people can take probiotics vaginally and/or rectally to improve things.

Congrats @Faithhopelove83

Not great news for me, there is a cyst in my right ovary, no idea where this has come from as I had no follicles in the abandoned FET, so explanation seems to be a follicle decided to grow on OCP and then ovulate and now the corpus luteum is a cyst, and it looked like there was something in it, the nurse said a follicle in a follicle. So they did a blood test for estradiol and now I'm waiting to hear back on what will happen next.

Thank you @2021ivfagain 🙂. Yes, 2 embryos transferred, both untested. 1 was a 5 day 3AB and the other one was a 6 day 3CC (our 2 lowest graded embryos) - though I think they may have developed and improved a bit after thawing. We still have a 3AA and 4AB in storage. Our 5AB resulted in MC last cycle. Sorry I don't know the answer to your question about probiotics - I take mine orally and vaginally. I hope you get your swab results and your infection clears swiftly x

Thank you @Gardenlady543 🙂.
I'm so sorry about your scan and cyst. It really has been one thing after another. I really hope you get answers and it can be sorted soon x

@Faithhopelove83 that is good news, I really hope all progresses well, when is your scan booked 🤞🏼
thanks for the advice - have you seen a reproductive immunologist or had it all done via CARE? do you mind me asking which clinic you’re with? Apparently they don’t do the dna fragmentation test now at CARE so he’s having a sperm oxidative stress test done tomorrow - apparently it’s a marker of if there is likely to be dna fragmentation because it’s the oxidative stress that causes it? I guess it’s screening and if abnormal we could go to Mr Ramsay? I must admit I doubt anything will be wrong, at least I hope so, as DHs numbers have always been good, and we’ve had 100% fertilisation with IVF and great progression to blasts, but I guess you never know and DH is keen to make sure which is really good of him.
they’ve said the karyotype could take 6 weeks but hopefully less. Otherwise that would be quite a delay. we had the bloods done yesterday.
I am going to repeat my AMH and FSH etc tomorrow as it will be day 3.

I’m sorry @Gardenlady543 that's such a frustrating pain, I hope the bloods come back ok.

@Gardenlady543 I’m sorry you’ve had this setback of cysts. It’s very frustrating. I had cysts the month before I got pregnant with my son. I was put on a progesterone tablet for about 15-20 days to get rid of cyst. It worked. Then I had to wait for my period and went into my egg retrieval cycle.

I hope they get back to you soon with the next steps.

@Faithhopelove83 Thanks. I’m waiting for my swab test result. Should get it back tomorrow.

Do you mind me asking when you took the vaginal probiotics? Which ones do you take? Did you stop the vaginal ones 2 days before transfer? Did you restart them again soon after transfer? Sorry for all the questions. I haven’t had much clear guidance from my clinic. It’s frustrating.

It’s really good that you have made it this far. You must be so happy.

Nobody called me so I called, nurse said my estradiol is 512, so the cyst is clearly producing estradiol. She wouldn't tell me anything, just said the doctor will call, so I expect he will call to say it's another cancelled cycle.

@Gardenlady543 I’m really sorry. That is such a setback. Can they put you on provera or something similar to get rid of the cyst?

@Gardenlady543 Is that high? My estradiol was about 510 when I was ready to trigger but I’m older than you and have high fsh. Over 500 is too high to start a cycle I guess.

I’m hoping they get back to you with a plan. I always like a plan when things are not going as well. You are so strong.

@Faithhopelove83 oh my goodness, congratulations!!!! Fingers crossed. Is it a strong line? Just wondering about twins!!

@Gardenlady543 oh shit. So bloody annoying. Have you had a final decision yet? I too had a baseline scan where a cyst was found. This is embarrassing but I can't remember if it ended up in a cancelled cycle (I had a lot of them for various things) though. I really hope it's not cancelled (unless you want to) as it's so devastating when that happens.

Love to all

Thank you @Enfys23 , that's really kind of you ❤.
I've not seen a reproductive immunologist yet. I did the level 1 recurrent miscarriage tests through Tommys / NHS recurrent miscarriage unit and the level 2 (NK cell / immune) tests through Care. Care have put me on intralipids, pred and Inhixa for this cycle, as well as Lubion and pessaries.
I'm with one of the clinics in the Midlands (sorry, I'd rather not be specific).
Ah, I didn't know they've stopped doing the Sperm Comet test. Yes, it's to do with oxidative stress - can be caused by lifestyle factors, infection, varococele, etc. We were given a false sense of security - diagnosed as "unexplained infertility" for many years and everyone kept saying what "super sperm" DH had, it was perfect. It was only after 2 MCs that we did the Comet test and discovered very high levels of DNA fragmentation. Proxeed Men helped and also advice and antibiotics from Mr Ramsay, plus ZyMot and ICSI. Hopefully your DH results come back fine and you can rule it out.
Hope your AMH and FSH tests come back fine too. My clinic haven't tested my AMH in over a year and it must be years since FSH tested. They seem very light on blood tests compared to other clinics!
Which clinic (or area) are you at?