ERA EMMA ALICE testing thread 9

[Gardenlady543]

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Spin101 @Loz2467 @Mybabydream @Janefx40 @ChickenT2b @kerrym87 @Sar1010 @AM08 @thislittlebird @IVF22 @APSR
@Faithhopelove83 @KLM25 @VenusStarr
@BewilderedBee @Dochas12111 @seven201 @StillWishingHoping

We've maxed out the other one so here's thread 9 😊

Thanks @Gardenlady543 . For the last week and a half, I started taking Vagibiom daily but recently switched to Balance Activ for two days. I’ll try alternating both every two days or so and will keep an eye on pH. It was high at 5 on Monday, hence switch to Balance Activ.

@Loz2467 hope your lining scan went ok on Monday.

@CailinInUK balance acitiv likely has more acid in, so maybe use that for 7 days, if you have another probiotic then use that at the same time, otherwise you can just move to vagibiom after the 7 days. I don't think there is a right or wrong answer here. Don't use the acid products while you're on your period though.

@CailinInUK thank you! Sorry I’ve been quiet. My lining scan went okay thanks - still the adenomyoma there but it isn’t going anywhere. Sadly! Think it was 8.5mm ish. We’ve stuck to the same protocol but I started my Predisolone a touch earlier and blood thinner. Started my progesterone today ready for transfer Tuesday. Feeling just numb. Not sure how many years I want to continue this for. The chemical last time was so hard because the lines were so dark I didn’t realise it would be a loss - I know that stands for nothing. Then also worrying that I’ve only got early blasts left. :( not sure if I should have started my predisolone even earlier but with using it empirically without testing it’s hard isn’t it.

How are you? X

@Loz2467 ah this is very exciting! It's so stressful and upsetting to go through this again and again :( I really hope this one is the one 🤞

@Gardenlady543 thank you and thanks for all your support. I just can’t see it working when my last one was a chemical :( thinking will the additional immunes help with the protocol and the intralipids or not. It just feels like a guessing game. Worried about a total implantation failure as so many things need to line up don’t they.

@Loz2467 this is how I felt, after my chemical in December which was my first positive I thought I will be absolutely heartbroken if the next transfer I went back to no line at all. I remember being so upset the night of 5dp5dt thinking well tomorrow I'm going to know if it's worked or not and I was sure it hadn't and then watching the very clear line appear the next day. I met the surgeon today and he commented how with my awful history it's great that I have had a completely uneventful pregnancy. So if it could happen to me, it could happen to you too. All you can do is try.

@Gardenlady543 This is exactly how I’m feeling! I can’t stand the thought of going back to implantation failure after all this work and effort and then worrying if I was in a better place last time because of the surgery etc. I just don’t know. :( Then thinking if this is only an early blast how will it even work. I pray I didn’t cause the last loss. That’s so great how smoothly your pregnancy has gone! How many weeks are you now?

I can’t remember all the things you said you changed between your chemical and success: is it all the things we talked about? Shall I take 100mg doxy twice a day for the 2 or 3 days leading up to transfer?

@Loz2467

after my chemical I did a saline scan which was abnormal and then a HSG which was fine. I did this as I'd had the open fibroid surgery and hadn't checked after.

I checked my bloods, including my iron which was fine.

I started on low dose naltrexone because I have thyroid autoantibodies.

I had a review with Dr Gorgy who said we had the formula right and to do the same again.

Then I had a nightmare getting to transfer with my lining and had several cycles cancelled, so we changed the protocol to remove letrozole and stick with low dose stims.

I added the doxycycline as you already know about.

I did pre and post transfer acupuncture.

I had pineapple core from 4 days before the transfer until 4 days after. I blended this with pineapple juice and drank it.

@Loz2467 30 weeks now.

@Gardenlady543 ah yes I remember you saying about the letz now! I haven’t thought about the pineapple core! 30 weeks… eeek so exciting!

I guess I can only try just stressing incase that was my only chance at implantation and I’ve messed it up. Or maybe I do have immune issues because of the adeno and needed more steroids etc. If this fails she reluctantly agreed to to a natural cycle! Not even a natural modified. Which worries me because my ovaries are never gonna wake up after all this down Reg and plus my worries about it falling over Xmas. But I’ll have to see about that. Is is worth me doing NK testing with fertylysis in the new year if these don’t work or pay the 3k or whatever it is and see Dr Gorgy in the new year. Not sure how long his wait is. Do you find he gives the same protocol? I feel like I’d want to try the hydroxycloriquine for cytokins.

@Loz2467 he does give out very similar protocols for people, usually using LIT (which takes a few months), hydroxychloroquine, prednisolone, intralipids or IvIg. Other things will vary on the results of tests. No waiting list as far as I'm aware. It's quicker and easier to do the Chicago tests with him but the cost of tests will add up. Fetilysis he will interpret and you'd save a bit of money doing them but he will likely still want things like a nk biopsy. Anyway you don't need to think about this right now.

Hello everyone
@Gardenlady543 so good to hear things are progressing smoothly and long may it continue 💕

@clhiu I am so sorry to hear about the recent loss. I am glad you can find a silver lining and hope and strength to continue. Thinking of you

@CailinInUK bless you you’ve had a right time of it! COVID and then this. Hope you’re feeling better with the antibiotics.

@Dochas12111 you're definitely doing the right thing to address these issues first. You know your body and case better than anyone. You’ll kick yourself if you crack on without addressing it and we all torture ourselves enough as it is. Hope all gets sorted soon so you can transfer in the new year.

@Loz2467 sounds really promising. It’s so hard to keep going but you are doing everything humanly possibly.

@2021ivfagain so sorry to hear about how things are at home right now. I’m glad the counselling is some help 🫂

@ChickenT2b really sorry to hear but sounds like you’ve got a great plan lined up now.

I am now just waiting for a lap + excision endo at the end of this month.

I felt so disappointed and lost after the London appointment. But it pushed us to get a second opinion and then book a consult at a BSGE accredited endo centre. My symptoms have got horrendous anyway, no doubt fuelled by months of IVF, so think need this to make life more tolerable and think we need to see if this will help our chances.

MRI showed some changes but only a small area of adenomyosis so hopeful that won’t impact our odds. The images are now also being looked at by the endo MDT so will see what they think.

My endometrial biopsy showed high/skewed NK cells so considering that now too.
DH also waiting sperm dna frag and semen culture results.

Hopefully all this information gathering and treating the endo better will lead to a good plan for next IVF in new year. I am struggling with fact that after July cycle I wanted to just crack on with the next ASAP and now it keeps feeling further away. But it also feels like the right call to do the lap and not keep doing IVF expecting different results.
Then will just need to find an IVF clinic again 😬

@Gardenlady543 Yeah I guess I can see where I’m at at new year and go from there whether to get the tests. I might need the hydroxy for cytokins and I believe pred and intralipids are more for NK cells but I don’t n ow a huge amount about all the immunes.

@Enfys23 It sounds like you’ve made some
really good progress in your time away! Just curious have you ever done the long down regulation? As in prostap for 2/3 months prior to transfer? The only time I got implantation was after that and adding letrzole too which supressed even further. I mean it ended in a loss but it’s the furthest I’ve got. It calms all the Inflamation from the endo and adeno so even after your lap you could do a longer down Reg just to give you the optimum chances? Will you be adding intralipids or Predisolone next time too? How did you do your NK testing? I’m just taking empirically at the minute but would like to know ideally if there are any issues.

Hi everyone, popping on here for some advice really. I’m finding the monthly cycle threads quite tough to deal with at the moment, because it feels like most people seem to get pregnant with their first cycle/1st or second transfer. I’m feeling a bit like I’m in this for the long haul.

History:

I’m 35, DH is 37. Officially have unexplained infertility diagnosis.

TTC for 4 years 4 months. Never had a BFP.

Initial bloods show I have underactive thyroid. No antibodies though, so not likely hashimoto disease. I also had high prolactin levels (1000 ish) which went down to normal levels when I started taking levothyroxine. Currently on 75mcg. My levels have, and do, fluctuate like crazy so I’m not convinced they’re fully stable but trying to increase my dose when they’re in the normal range is like drawing blood from a stone. Last blood check TSH was 1.98.

I apparently ovulate monthly. Very regular cycle of 27-29 days usually. AMH in March 2022 was 13. Low side of normal. HSG was clear.

My right ovary is small with no follicles, it doesn’t have an AFC. It doesn’t respond to stims at all. Sort of explains my AMH as all my eggs are from my left ovary. Literally no idea why - never had surgery around there, no mention of endometriosis or anything.

DH bog standard sperm analysis always normal.

NHS round 1: Long protocol- didn’t down regulate at first. Ended up on buserelin for about 6 weeks before could start stims. 300iu Ovaleap - responded very quickly, ready in 9 days. HCG trigger. Eggs grew unevenly. 8 eggs collected, 6 mature. We were originally going to half and half ICSI/IVF as we had been trying for x3 years at this point. But as only minimal No of eggs decided on ICSI. 2 fertilised. Was told very good sample for ICSI. Both fertilised eggs progressed, 1 poor quality blast transferred on day 5. Other didn’t make it to blast on day 6 and was still morula although still developing but discarded. BFN.

WTF appointment: Consultant had quieted with embryologist- my eggs looked fine. DH sperm was good. Couldn’t explain shocking fertilisation results. Advised to do SOS sperm test. SOS came back positive, not high positive, but not normal either. Advised likely DNA fragmentation. DH went on proxeed for 3 months and I went on proxeed women for 3 months.

Cycle 2: Change of protocol. Short protocol, Gonal F and meriofert. Lower dosage, was increased on day 8 after first scan. Ready in 12 days. Duel trigger (1/2 HCG 1/2 buserelin). 8 eggs, all mature. Used AOA and zymot chip. 4 fertilised - x3 blasts out of that. 1 day 5 fresh (BFN), 1 day 5 frozen (BFN) and 1 day 6 frozen expanded blast (still frozen).

Both fresh transfers I have started bleeding 7dp5dt.

Just had medicated FET - on x3 cyclogest a day. Progesterone on day of transfer was 31 and they wanted in 45 or over, so lubion injections from day of transfer as well.

FET is a BFN at 9dp5dt and I’m realistic enough to know that we’re out. OTD is Sunday. No bleeding this time round, but with lubion and the FET that’s not too surprising.

Our embryos that do make it seem to be a bit slow. Day 5 last round 3 were early blasts and had 1 morula. Early blasts made it to full blasts by transfer later in morning. Remaining early blast day 5 was a bit slow but was expanded blast by day 6. So they do seem a little bit sluggish. Morula just didn’t grow into a blast enough to be frozen on day 6 but was still developing.

I’m not sure if this is an egg quality issue, fertilisation is poor, but ones that do fertilise don’t seem to arrest. They grow, slowly. Some so slow that they’re not developed enough to freeze by day 6. Or is this just potential issue with sperm and likely DNA frag, but given the supplements, better lifestyle, ICSI and Zymot there really isn’t anything else I can think of doing here.

I suspect we have an implantation issue. 4 years never had a BFP. I’m thinking next steps:

ERA/EMMA/ALICE

Blood clotting screen - I think CARE have their own

Talk about possible immune issues? This is based on the fact that nothing ever implants and my thyroid basically has a mind of its own (it’s been known to fluctuate from 2.78 to 7.9 in the space of 3 months on same dose).

I’ve never had lining issues, always triple layered, good thickness. No issues noted on HSG or 3d ultrasound or any ultrasound I’ve had so far. No fibroids or polyps ever noted, so not sure if hysterscopy would be worth it?

Any ideas of any extra tests we should be having/asking about? Or do these sound about right? I’m at a bit of a loss now.

Thanks @Loz2467 I had my endometrial biopsy done via the Warwick uni implantation clinic. I’ll be doing high dose pred from early in the cycle (the cycle where I have used pred from earlier on at a good dose is the only one in all these years and all these transfers that I’ve had hint of positive so I’m hopeful on that front)
It’s something I’ve discussed a bit but everyone I speak to seems to think it’s a bad idea for me because it might worsen my thin lining issues, and with prospect of further egg collections might hit my already poor response to stims even worse. You just can’t win can you.

@Lauralozzle I am really sorry to hear all you’ve been through. This is the club no one wants to be a member of!
I was with CARE too and they only seem to do SOS test. Is it worth seeing Jonathan Ramsay or at least get further testing done? My DH has just had his sperm dna fragmentation test and semen culture done via the beaconsfield clinic. He’s never been investigated because his tests always been fine. But with all our RIF the specialist we spoke to recently said we should check it out.
when you say no antibodies is that just no anti TPO (thyroid peroxidase?). I have underactive thyroid and my TPO antibodies always been ok but my thyroglobulin antibodies were raised (I had to do this via medicheck as standard NHS primary care doesn’t usually test).

Hi @Lauralozzle have you joined the implantation failure group on Facebook? (Screen shot attached). The advice you would get there is check for endo with a lap and see a reproductive immulogist.

The implantation failure tests care do can be helpful, they will do a autoimmune screen and Thrombophilia screen, some people just go on LMWH without testing for Thrombophilia issues though.

Microbiome testing can be useful. ERA is a bit debated, I ended up ignoring my ERA result and going back to normal timing.

I agree with @Enfys23 about testing for thyroglobulin autoantibodies, these are the only ones I have as well.

Hysteroscopy probably won't be useful if you have had a HSG or saline scan and you said your HSG was normal.

@Enfys23 Thank you. It certainly is a club no one wants to join. The minority of the minority. I had a medichecks advanced thyroid test this year and TPO & thyroglobulin were okay. I can’t help but think there must be something though.

It might be worth further investigation into the DNA frag, especially before our next full egg collection cycle. I don’t know why CARE only seem to do the SOS test, but apart from scanning for a varicocele and getting that sorted if there is one, my understanding is that it’s supplements and ICSI. Definitely worth a full test though before next egg collection.

It all feels a bit like the pits at the moment.

@Enfys23 your plan sounds good, the time it takes for tests is so annoying, I remember doing 1 transfer then 6 months of tests and then repeating. But all info you can get is a step forward.

@Lauralozzle antibodies can fluctuate esp if you have fluctuating TSH on same dose.
I have a right ovary that doesn’t do anything either. My left one doesn’t manage much now either. Even though I’ve been told my AFC and AMH are technically normal (tho lower side). It’s apparently common in endo and autoimmune issues to have issues with ovarian response.
I only had a hysteroscopy because I had thin lining issues. I think some have it done if they’ve got something shown on a scan. Or there’s suspicion of adhesions from the history eg D&C.
I got put on clexane because one of my thrombophilia antibodies is raised.
I was lucky my EMMA/ALICE was normal.
I think it’s definitely worth exploring more about the sperm given the fertilisation and progression is poor. It’s a lot easier (though I know pricey) to do male testing than put you through really invasive procedures! (Though I get often both needed). It’s bizarre so little is done on the male side in the UK. My DH was able to self refer to Fertility Solutions for his tests.

@Gardenlady543 thank you. And thanks for mentioning Nancy Nook surgeons a while back. I feel I’m in really good hands. You’re so right. I found the 5-6 months from 2nd fresh transfer to the FET so hard with all the thin lining related tests. But this does feel like the right time to really make sure we are covering all bases.

@Gardenlady543 Thank you. Wasn’t aware of that Facebook group so will have a look and join.

I better start playing the lottery and hoping for a win for private lap! It has been on my mind though, and that it might be the reason I effectively have one ovary. With minimal symptoms though I doubt the NHS will bother, and the waiting list for that I imagine is long!

@Lauralozzle welcome to the group and sorry for your tough journey so far. It sounds like you are looking into all the right things so hopefully you will find something that can be solved.

@CailinInUK hoping for a January transfer too. Fingers crossed it will be a lucky month for us.

@Enfys23 has your DH seen a urologist? I get it’s tough having to take a pause. We did same and it did pay off for us - took between April and November to do tests and investigate everything and prior to that took 3 months to work on diet and supplements etc and before that 6 months to fix DH sperm! Each break we found something wrong which was either fixed or addressed in transfer / egg collection protocol.

open question to anyone treating Emma/Alice - what probiotics are you taking? I’m taking Canesflor vaginal and optibac for women. My consultant asked me to take physioflor but I can’t find it! Wondering what you guys are using and if I could be doing better than Canesflor and optibac! Consultant said that I might find physioflor in US and I have a brother living there but don’t know if I want to ask him to traipse round pharmacies looking for vaginal suppositories for his sister 😂😂🙈🙈

@2021ivfagain sorry to hear things are so tough

@Gardenlady543 hope you’re feeling well

@Dochas12111 physioflor is a European product, French I think, they used to make a product that had 7 vaginal capsules in it, it was good as it had l. crispatus, but they sold out everywhere last year so I assume it's been discontinued. I did email the company but never heard back. They did have another product with 2 vaginal capsules in it, but again I can't find it anywhere. I think your speicliast ia probably unaware you can't get hold of it now. Never heard of it in USA. They do a oral probiotic, but there are lots of them on the market.

Your best alternative is vagibiom which has l crispatus in it and flora femme that doesn't have l crispatus but has a huge amount of other bacteria. Both are from USA. You would be best off sending your brother links and having him order it from the official websites and then post it across to you. Alternatively you can order it yourself flora femme from their website and vagibiom from eBay.

@Lauralozzle really sorry about your current BFN and long journey. Sounds like you’re on the right track in terms of what to do next - blood clotting screen and immunes. I had Level 1 (blood clotting etc) with Care. You could try karyotyping and or PGT-A. Just to rule out a possible structural/aneuploidy issue.
Are you on supplements for egg quality?
I don’t have experience of thyroid so cannot comment about that. Hope you soon find the answers.

@Enfys23 so good to hear from you. You covered a lot of ground while away. I hope it all pays off. The waiting is hard. I got my euploid low risk embryo in July and won’t get to transfer until Feb! I did opt to do another cycle in Sept and then COVID and Christmas delays. Kind of glad I caught COVID when I did as at least I hope that gives me stronger immunity for a while.

@Dochas12111 I’m using Vagibiom and Balance Activ vaginally plus Invivo Bio.Me Femme V orally. I ordered Vagibiom from the US easily on eBay. It would be worth keeping an eye on your pH as that’ll indicate whether the environment is good for recolonisation. I think my transfer will take place in Feb rather than Jan, the way dates are looking. I’m looking into doing some yoga retreat in Jan to chill a bit!

@Loz2467 you have every chance with your early blasts. Any blast has a chance so you’re not wasting time. Remembryo’s article this week was a review of a study that concluded just that. The chances are a bit dropped compared to higher quality but still definitely worth trying. Glad your lining looked good on Monday.

I got my protocol for my Emma/Alice/ERA (low dose stim and trigger) (biopsy will be early Dec). Consultant has recommended Cyclogest x 2 a day only as the corpus luteum should provide majority of the progesterone. I’m wondering if I should up the dose to include Lubion…? Any thoughts?

Still waiting for my Fertilysis microbiome results, they’re due by Friday. I rushed taking the swabs as I needed to start my antibiotics so I was till bleeding a little from period/saline sonogram so they may be void. At least I should get the menstrual sample results.

Really glad things continue to progress well @Gardenlady543

Oh and I’ll be on Inhixa for the FET. Wondering if I should go on this for the ERA too so that everything is the same between both FET and ERA?