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

@IVF22 Sorry I can’t share any advice but just to say I’m also day one of a transfer cycle and had bad microbiome results a few weeks ago 🙈

@IVF22 did the report tell you want antibiotics to use? How long did you take the metronidazole and doxycycline for? Have you checked your vaginal pH?

@MyEasterEggs you can have LIT after pregnancy, Dr Gorgy told me if I get pregnant I'd come in for a session with it in the first 2 weeks. The idea is that the antibodies the LIT produces are supposed to be protective, this is how IVIg works as well (also antibodies).

@Gardenlady543 I decided against LIT before FET because we were so close to starting my cycle and it just didn’t feel like the right choice at the time. So it’s thrown me a bit. I suppose the stakes feel even higher now. My partner isn’t keen on the idea at all and feels we’re in a good enough place to carry on as planned since we’re further on than last five pregnancies. But we had a 16 week loss prior to those miscarriages so I’m growing more and more anxious. Most of the LIT stories I’ve read relate to women trying to get pregnant or having recurrent CPs or miscarriages in the early stages so it’s hard to make a decision. My history is quite chequered with no pattern. Also, last pregnancy was aspirin and clexane only. This time I’m pretty much doing everything besides LIT and it feels like progress is being made. So it’s hard to know what to do.

I’m all booked for intralipids - they’ve been so accommodating with a last minute consultation and squeezing me in after a major f*ck up by my clinic - so I just need to decide on LIT in next day or two…

@MyEasterEggs I don’t envy you this decision but I’m thinking it’s not dissimilar to having a vaccine because of the immune response it generates and given that can cause fever etc I would always try and avoid vaccines in the first 12 weeks of pregnancy if at all possible and only take before pregnancy or after 12 weeks because of this. So I would be too concerned because of that to do the LIT. Obviously I can only give you my thinking and concerns but as I said I don’t envy you. Really hope you’re doing okay xx

Sorry been quiet and missed a bit on here. Been struggling with the news of likely POF. Found it really hard to concentrate at work etc. My husband is home now after a work trip for past couple of weeks so at least been able to have some support, chat and cuddles! I have my hysteroscopy on Tuesday though and will see my main consultant so will have a chat with him. My husband wants to ask if they feel they know what they are doing next with my unresponsive lining and if not if they can advise another specialist who is used to cases like mine. He doesn’t want us to waste any more time especially knowing I likely have POF. I’ve asked admin and apparently CARE packages can be transferred between clinics... but £11850 would be a lot to lose otherwise.

Feeling less nervous about non-sedated hysteroscopy now. Hoping the biopsy results back soon and get some answers between the two.

@VenusStarr I agree that good to start with open questions eg what do you think are the learning points from this cycle?

I think at this point given how you’re both feeling it would be good to ask their honest opinion about positive and negative indicators in your case as hearing from the specialist what they think in assessing your case might help you on your journey to decisions about next steps.

Thinking of you on Monday xx

@Gardenlady543 hope all goes well and you’re feeling prepared/done everything you can at this point as you have xx

Thank you for your response. I took both antibiotics for 7 days. Report didn’t have any recommendations with it. I’m considering taking another course of metronadizole and maybe taking some vaginal clyndamicin for 7 days as well to make sure it’s gone. All very last minute though given I’m day 2 of transfer cycle. My vaginal ph is normal but it was before as well, I’ve never had any symptoms.

@Enfys23 sorry to hear you're feeling like this. You can get second opinions from places. I got one from CNY in New York I sent them all my documents and a summary and the doctor suggested some text steps. Dr Gorgy can also advise. I think that IVF treatment and procedures will be the same in most places. So in my case it's quite standard but I have add ons through seeing Gorgy.

@MyEasterEggs LIT is done a lot at that clinic, the antibodies are supposed to be protective but they would only be produced after a full term pregnancy in normal circumstances. So since I never implant you wouldn't expect me to have them anyway. So it might be something that helps on my case but if you decide against it that's fine.

I spoke with my specialist yesterday, ETA of CD1 is Wednesday after what seems like forever. She agrees to switch from medicated to modified natural. She prescribed letrozole 5mg to be taken in the evening on CD2-6. She had thought maybe to put me on 2.5mg, what dose is everyone else on? She said there could be 2-3 follicles but she's worried I'd have 5-6 follicles, which would be good for the lining but she kept telling me, no unprotected sex!! I managed to find a pharmacy that had it in stock. However she also prescribed the hcg trigger and they couldn't order that, you have to give the whole prescription in, I guess I have some time to sort that but I'm a bit worried not having it or a prescription to get it. I'm glad I get to try something different as the estradiol made me ill :( she warned me if the transfer falls on a Sunday it would be cancelled, she said usually they have some ability to time with the trigger but if I start producing LH myself then day 0 is the next day.

@IVF22 no don't take the clindamycin now, this test was done pre antibiotics yeah? So you have already taken metronidazole since, you don't need to take it again. I would advise at this point that you do 7 days of balance activ from when your period ends, then stop that. Every day including when on the balance active you take a daily vaginal probiotic and continue until the 6 week scan. If the cycle doesn't work you can take vaginal clindamycin then, but don't take it now, it will wipe out everything including lactobacillius.

@Gardenlady543 thanks for this. Was it quite easy to get your treatment file from your clinic?

@Enfys23 I just sent all the results of investigations that I keep in one document and then explained other things like what had happened in collection cycle, how my lining responds.

@Gardenlady543 thank you ❤️

@Enfys23 it’s a tough call. I’ve been reading about people having the LIT booster at 8 weeks, after having the treatment before pregnancy, so his thinking is that it might offer me that little bit extra protection even though it would be my first time. But he was also very relaxed about whatever decision I take. I just had this gut feeling before FET that it wasn’t the right way forward for me. But now he’s planted that seed again I’m left thinking if I don’t do it and we have another second trimester loss will I wonder what if? I’ve already had the flu vaccine and my covid booster is due in two weeks. I was a bit worried about it but a friend who works on the covid response to vaccines put my mind at ease.

I’m not surprised you’re finding it hard to concentrate. But try not to worry about the hysteroscopy. I haven’t had one without sedation, mainly because I was having other procedures at the same time, but I have had a biopsy taken without sedation and it wasn’t too dissimilar to a smear test. A camera was used for that too so I imagine it will be much the same.

@Gardenlady543 if you don’t mind me asking, since I have a child (conceived naturally eight years ago), it seems to me that LIT is unlikely to be the thing that supports this pregnancy. Everything I’m reading on Fertility Friends points to it helping couples eventually conceive. Is that your understanding? I’ve noticed one or two posts about people with secondary infertility having it after developing an incompatibility with their partner. But I’m 10 weeks and all the drugs I’m on seem to be working so far.

So pleased you’re finally getting going with your cycle. I haven’t taken letrozole I’m afraid so can’t help them. But surprised they’d cancel the cycle since I thought clinics had the ability to manage things so it could fall on a Saturday or Monday? Seems like a horrible weight for you to carry around during your cycle!

@MyEasterEggs I think it would depend on your LAD results. Dr G told me that after having a good response that I will have 4-6 months and then would need it repeating so presumedly the antibody levels reduce over that time.

They seem to use LIT for most people at the clinic. I have a complete HLA DQA1 match so I'm one of those incompatible people. It's a really weird situation as some people don't believe in it at all and some say it's a hopeless situation. Some say that couples can have 1 or 2 successful pregnancies before going on to have recurrent implantation failure or miscarriages. In my case I've never implanted ever, so if this is the cause of that it's felt that I implant but my body stops the pregnancy before hcg is even detectable.

Thank you so much. You are right I am reading about clindamycin now and it does wipe out the good bacteria as well. I will do as you suggest re balance activ and probiotics and then cross my fingers x

Hi Ladies,
I’ve posted here before re micro biome questions but wondered if you have any advice..
We started TTC in April 2021. Had a MMC in March 2022 after 9 months ttc. I then had what I think to be a chemical pregnancy in May (lab confirmed pregnancy tissue).
And now TTC ever since.
My partner is 40 in January so will now be booking a GP app for semen analysis. I am 32.
We won’t qualify for IVF funding as my partner has children from previous.

I’m not sure where to go from here.

Can anyone recommend a fertility clinic/ consultant that can ascertain if IVF would be a right course of action or figure out if there’s anything underlying preventing pregnancy? I don’t want to throw money down the drain so would prefer to choose based off recommendations.

Many thanks

@Gardenlady543 I definitely think there’s something in it and in your case - especially with your results and since you’ve responded to LIT - it seems worthwhile. I’m just not convinced it’s right for me as everything seems to be going fine so why introduce something new at this stage? He’s suggested my partner come and we do LIT and bloods same day. So start treatment even though we don’t have results. I know it’s probably harmless but it feels like the intralipids and other drugs are doing their job. I’ll read a few more papers (not that I bloody understand them) and try and put my mind at rest!

@ChickenT2b your gp will be able to do your day 3 bloods (LH, FSH, TFT's, testosterone, DHEA, sex hormone binding globulin, prolactin) and day 21 bloods (progesterone). If you haven't already had them. You can ask if they will do your AMH as well. Sounds like your partner is having a semen analysis on the NHS. Once you have the results I would recommend booking in with a local clinic and giving them the test results, they will want to do a ultrasound scan as well. It's probably best you chose a local clinic, recommendations can be useful if you know there is a specific issue eg a diminished ovarian reserve.

@Gardenlady543 thank you. I have already had all of the tests, not sure on AMH need to check. I also have an ultrasound booked to check my internals as I had a large cyst and suspected endometriosis.
I was thinking more along the lines of someone like Dr Shehata or Dr Gorgy but not sure if this is necessary at this point, maybe depending on results of US. I guess I am worried in case something goes unnoticed at a local clinic and wonder if these doctors check for more things 🤷🏼‍♀️

@ChickenT2b I think if you have suspected endometriosis and a large cyst then the advice you will get what you do next is probably going to be quite similar. You would benefit from a lap to diagnose and treat endo but you may need to discuss when to do to this, if you want to create embryos for IVF I heard endo can affect egg quality, but then I also heard surgical removal close to the ovaries also affects this. You'd also need to discuss what to do about the cyst.

I'm not sure how useful Dr S and Dr G would be at this point as you really need to explore the initial investigations first. You'd likely end up spending a fortune with them, on tests you may not need at this point. I was start with the basics and have a discussion on what to do based on the initial bloods, semen analysis and ultrasound. The only other thing to consider that is often not done is a HSG or saline scan.

@MyEasterEggs I don't know much about LIT so I can't really give any advice. It's not an easy decision to make. I guess you have to go with your gut feel of what feels right for you

@Gardenlady543 great news you've finally got your estimated CD1! Fingers crossed that your transfer doesn't fall on a Sunday

@Enfys23 sorry to hear you're struggling with your POF diagnosis. I can empathise as I went through the same thing. I know what it's like when you first find out the news. If you ever feel like reaching out when you feel ready, DM and I can share my experience, give some pointers. Good luck with your hysteroscopy. Sending you hugs

@ChickenT2b If you do have endometriosis, they generally won't do anything with it, unless you're symptomatic with it e.g. very painful, heavy
periods, back ache etc They are reluctant to do surgery, as even with keyhole, it will reduce your ovarian reserve. A study was done with 3 sets of patients 1) no history of anything 2) history of endometriosis who donated their eggs and 3) history of endometriosis and received donor eggs from a donor who had no history of endometriosis. Groups 1 & 3 had the same pregnancy rate whereas group 2 pregnancy rate was lower. So surgery isn't always necessarily the answer. The main problem with endometriosis is it affecting your egg quality. One of the best ways to manage endometriosis is through diet and accupunture. Hopefully your US will shed a bit more light on what's going on

Good luck to everyone this week as it seems to be quite busy with one thing and another. I know some hqve reviews, procedures and starting cycles 😊

Hey @Gardenlady543, as someone who also experienced a complete lack of implantation (over almost 3 years and 4 transfers) I thought I’d share some of the things that I did differently this cycle that may have made a difference separately and / or combined: high NK cells were discovered, so the intralips they tried on two cycles were swapped for prednisolone from 3 days before the transfer, I had the ERA which said I needed additional progesterone and for the first time no adjustments were needed at the last minute as my level was over 100 in my pre-transfer blood test, so they got the amount and timing of the progesterone right, I did acupuncture from CD1 and had specific pre- and post- acupuncture on the morning of and afternoon after transfer. I also had unprotected sex the night before (there’s a study on this for unexplained infertility). I took aspirin and clexane from the day after my transfer. And lastly, it might sound a bit hippy, but I did a lot of visualisations, avoided cold food and drink (at the advice of my acupuncturist) and sorted my head out. All of my embryos were euploid and graded AA-BB, so I don’t think this made a difference.

Thanks @OrangeBengal I feel like I'm the last implantation failure person standing :( I talk to a few people that have never implanted and they all seem to be pregnant now.

This will be my first transfer on a immune protocol, I have high NK and the full DQA1 match so I had LIT x4, I've been on hydroxychloroquine for 3 months now, I'll take pred and clexane from CD7 and having intralipids around CD8. When Dr Gorgy did my nk activity biopsy he said with a certain result they recommend semen at the time of transfer, but I didn't get that result and I'm worried about it affecting my microbiome, also my specialist literally couldn't emphasize enough, no sex in the modified unmedicated cycle lol. Glad to hear the progesterone was worked on and helped in your case, as I will be on a big dose but I'm hoping the PIO gives me an advantage. I did some acupuncture in the past, I actually bought a course and then never went back. Think that's the only place around me that does fertility acupuncture and thinking about going back upsets me, think it will remind me of the trauma of the past cycles that didn't work. But I will try and add in relaxation as a replacement. I also love being hot and have a heated throw so staying warm should be doable :)

It's all feeling quite real now, and it's come at a time when I've had a lot of pregnancy announcements in the last few days, just feel like the odd one out, like it will never work for me :(

I understand @Gardenlady543. It (tentatively) seems like the specialists might have finally worked out a plan for you that covers all factors, so I have my fingers and toes crossed for you!

If it hadn’t worked for me this time I was going to try fresh again and a do a dual transfer, a 3 day and a 5 day embryo, so this might be something to discuss with your consultant.

I was also considering a frozen cycle where we waited until after natural ovulation to add in oestrogen and progesterone. There are still options, it’s just how long you want and can keep going.

Sending lots of love @Gardenlady543.

I found acupuncture tricky for different reasons. It was like I developed a strange phobia around the needles and just couldn’t relax into it.

I also decided to completely change up my support network after the trauma of previous losses. So if you want to try something different, maybe treat yourself to some reflexology? I went to Charlotte Bentley while I was in London, she’s fertility trained and focused, and we had two sessions ahead of transfer. If nothing else, it relaxed me, I napped in the sessions and had a great night’s sleep afterwards. It certainly helped with getting into a calm space.

Wishing you all the very best for this week and beyond. We are rooting for you 💛

@Gardenlady543 planning a transfer for next summer but was trying to figure out if we need to do more egg collections as if so that would be after Christmas, so we retested the embryos to see where we are at. We now have 1 retested normal, 1 retested low mosaic approved for transfer and 1 untested.

Im sorry you are having such a hard time and lots of pregnancy announcements. I often felt the same that we are the ones it’s not going to work for as everyone - including friends who started IVF 3 years (!!) after we did had their babies. Hopefully this new protocol is your missing link. I am really rooting for you. You are so kind sharing all your knowledge on here with others.

I wouldn’t bother going back to acupuncture if it brings back bad feelings. I stopped going to acupuncture and reflexology and instead started going for a massage - nice spa atmosphere and very relaxing at the same price!

when is your transfer planned for? Are you still doing PIO on alternate days? Would you consider doing it daily? Just if you’re going with a kitchen sink approach!