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

@Loz2467

Hi. I’m sorry you’re going through a lot of stress. You do have positives on your side. You are 36 and at this age most eggs will be normal. I had a fresh transfer at 38 (3 months away from 39) and got pregnant with IVF IMSI. My egg quality was really good at this age.

A fresh transfer is a good idea. It is good for lining.

Are you doing long protocol for IVF? I know I did and took norethisterone as well as other medication which turned off hormones. Are you doing short protocol instead?

@2021ivfagain Thank You! So glad your transfer worked out for you. I need to read back on the thread so I can see where everyone is up to.

I think secondary infertility just messes with your mind so much hence why I’ve held on for so long wondering if next month would be our lucky month when it hindsight I wish I’d started it in Jan of this year and then even more frustrating when I’ve been on the wait list for a laproscopy for 12 months and I could of had it done on my works health insurance.

Yeah so I’ve basically need to start norethisterone on the 20th Of this month for 10 days. Then have my withdrawal bleed then got dates for first injections and egg collection etc. I’m just about to have another look at my protocol. I’ve seen is is bureselin and a few other things used for down reg.

Im wondering if to try 2 transfers and if unsuccessful have the laproscopy.

Surely the vaccine couldn’t of caused spotting issues but it’s driving me mad not knowing what’s causing it. It’s definitely not coming from my cervix as the cyclogest I take after ovulation is completely stopping the spotting so it must be coming from my lining or endo?

@Gardenlady543

I’ve just read that an ultra low biomass means that there is hardly any lactobacillus in it. I’ve been on oral probiotics for months and I have been taking lots of vaginal probiotics. I think it’s to do with the decrease in my oestrogen and also the amount of antibiotics I took for the batching cycles.

I’m wondering whether I need to do the transfer in February. I’m worried about fsh getting too high and not being able to do stimulated FET cycle. Sometimes I think I should just give up. Sorry.

@Janefx40

Hi. Do you remember how your microbiome was described for Emma? Was it high biomass?

@2021ivfagain the test works by assessing the RNA of the bacteria found in the sample, my interpretation is that overall there was a low amount of bacteria to assess, this is likely why you didn't get percentages.

@seven201 that makes sense maybe worth trying to figure out costs so you can have a think about potential plans.

I'm getting side effects from the steroids, it seems to hit me around 11-2, pounding fast heart rate, weak and dizzy and blurred vision. Seems to ease off and I feel fine in the afternoon.

@Loz2467 I don't know too much about adenomyosis really, I think they sometimes do a MRI. I think for now the focus is creating embryos, if the fresh cycle doesn't work, you could explore the potential diagnosis after.

@2021ivfagain it may have just been a sample issues to be honest, it doesn't mean the other parts of your endometrium are the same. The main thing to focus on is that dysbiotic bacteria weren't detected.

@Gardenlady543

Thanks for your messages. I’m just feeling a bit overwhelmed and upset today trying to take it all in. If I had time, I would just take lots and lots of vaginal probiotics for 3 months.

This is what is said for Emma:

INTERPRETATION OF YOUR RESULT AND RECOMMENDATION
A low amount of bacterial DNA has been detected in the endometrial sample with a profile compatible with normal endometrial microbiome. The amount of dysbiotic or pathogenic bacteria detected is not significant.
Probiotic treatment with vaginal Lactobacillus is recommended. A second biopsy is not required.

@Gardenlady543

I wish I could take the vaginal probiotics longer. Did you say you are stopping them before transfer?

Is anyone ever taken neupogen or intrauterine hcg? Because I have low nk cells in endometrial lining and high nk cells in blood, things are complicated. I’ll be on ivig drip and steroids as well as standard blood thinners (inhixa).

Does neupogen thicken lining as well? I’m a bit worried as my lining gets really thick. Last time it was 12mm after ovulation.

@Loz2467

Thank you. Things were easier then when I was 38. It’s a different story TTC for second baby. You have a good chance.

@2021ivfagain I think I saw someone talk about neupogen, I think they were advised by another patient that the wash thickens lining and so peripheral treatment may be better if the lining is thick. But your doctor can advise you on what's best dependent on how the cycle goes, how thick your lining is getting etc.

I honestly think they got a sample without much bacteria overall, they say the ones they found look normal. So I think what you're doing with probiotics is absolutely fine.

I started taking vagibiom at the start of this cycle after my period as it has the acid in it for about 7 days, then I moved to physioflor until around cd12 I stopped for 2 days when it looked like the cycle would get cancelled, then when I had the good scan on cd14 I opened a packer of flora femme so will do 6 of them that takes me up to Monday night, I think I will stop then and give myself some time without vaginal probiotics for the transfer, as I don't want extra liquid going up with the transfer catheter and need my body to decide what it's doing with the pH but I may keep an eye in the 2 week wait and start again. Honestly I am changing what I'm doing constantly. I did my vaginal pH the other day and it's looking really good so I think I'm doing quite well at the moment.

@Gardenlady543 Thank you! I guess I’ll get to egg retrieval and go from there. I just feel so many things are stacked under against me already. With the brown spotting. My AMH being way out from my follicle count so I’m wondering if they are cysts or empty follicles. Thin lining with cystic areas even in luteal phase. I’d feel better just not having had the brown spotting for the past 18 months. I wonder if my miscarriage or infection has trigger the endo or adeno. I sometimes question if I’m doing the right thing but I don’t want to live with regret.

@Loz2467 my experience has been that we can have loads of stuff thrown at us in this journey, at times I've been completely distraught and that's probably come across in this thread! I guess we often won't find out why things have happened and how things might have been different. But, what we can do is take the problems and try to optimize the situation. I think until you have your egg collection you won't know what the result will be, there can be valuable learning points based on how the collection cycle goes, it can add really valuable information. I think the first priority for you right now is to focus on the collection cycle: get your meds ready to go, know what you're doing with the injections, get through the cycle. Once you've created embryos you have achieved so much.

@Gardenlady543 how long have you been on the steroids for? Hopefully that side effect will wear off for you soon. I normally struggle
to sleep when I start talking them for about 4 or 5 days, then my body gets used to them.

I've just been on an online vaginal probiotics shopping spree!

@seven201 ahhh I've been there, I think I'm keeping these probiotic companies in business!

Today is CD18 and I started prednisolone on CD7 I'm on 25mg so a fairly big dose. The symptoms seem worse on PIO day. I've been taking nytol (diphenhydramine) which is used in the antihistamine protocols, I hope it's ok to take it as it is really helping me get some good sleep.

@Gardenlady543 oh good shout. I might try that then! I’m on the same dose. It’s not a nice drug to be starting and stopping I find!

@ChickenT2b I had endo on left ovary and they lasered it during a lap - they di ovarian drilling too due to my pcos. My left ovary has less follicles and gives less eggs now but I still produce at least 4 on that one. Not had successful ivf yet but I am more complex, some sperm issues and immune influenced health issues plus got covid in last round. Not sure if that helps but clinic not worried at all as it's overall quality of eggs they focus on more. Endo doesn't necessarily stop success x

@kerrym87 @Gardenlady543 thank you both.
I guess I need to remember I also have another ovary which apparently is fine. Will see what they say at the gyno appointment and take it from there. Google is not always right clearly!

@VenusStarr so so sorry to hear you’ve received bad news about your DH. I hope for the best outcome for you both.

@Loz2467 thanks v much for the cheaper meds website, I’ve bookmarked it! We’ve spent an unbelievable amount so far so every penny counts at this stage. I howl to cycle with you in New Year but depends on when period returns.

@Gardenlady543 hope you’re in a good place and ready for transfer tomorrow. Do you know what you’re transferring? Got absolutely everything crossed. I was on 20mg prednisolone and it seemed ok at first but side effects built up over the 12 weeks - huge appetite, sleeplessness, fatter face, etc. Look after your immune system and reduce risk of infections while on them.

I’m CD39 since late miscarriage and still waiting for AF. Hope it’ll be within the next week. I’ve ordered my Synarel to start on Day 21 for long protocol so now in limbo. The waiting is one of the hardest parts. Also waiting for Juno Bio microbiome results. We have to do ICSI anyway for the PGT-M but I’m considering getting DH to do a DNA fragmentation test to make improvements if we need to. He’s already fairly healthy and takes basic supplements but every small margin will help at my age. I don’t know different between TUNEL, COMET and DFI, their pros and cons and which to go for. Will any do? His motility was very low last time, which was not the case before. Maybe just an infection. We normally get 60-70% fertilisation and 50% blast conversion rate.

I’d like to get a hysteroscopy done before next transfer due to having had surgical management of miscarriage (if we manage to get one to transfer, PGT-M and PGT-A passed). I have private medical insurance but don’t yet have any cause for requesting one (will wait to see if periods return to normal). What are acceptable, plausible reasons for getting it done privately? I understand that the insurance doesn’t cover infertility.

@CailinInUK I would have though any period issue could be a reason for a hysteroscopy as far as your medical insurance goes, could be painful periods, and add in whether they are light or heavy. Insurance really don't need to know much and if you are having the procedure done by someone who doesn't work in fertility medicine but is in gynaecology then it is unlikely to be questioned.

I did the DNA fragmentation through fertilysis, I have no idea about the various ways of doing it though.

I have a very good embryo, interestingly the clinic prioritise by the embryoscope score so I have transferred lower graded embryos first. Think tomorrows transfer will be a euploid 1,1 8/10 embryoscope score. I know a lot of people would do anything for this type of embryo so I'm lucky on this front. But unfortunately excellent euploid embryos haven't helped me in the past.

I was in this morning for my progesterone test, the result will be back tomorrow and the transfer has been booked in for the afternoon. I have my medichecks beta and progesterone test ready to go which I will attempt on 8dp5dt- I will be competing against a royal Mail strike, xmas postage backlog and everything shutting down including the postal service and lab if it doesn't make it there and get processed within 24 hours. But hey, what else can I do.

How's everyone else doing?

How are you feeling about tomorrow @Gardenlady543 ?

House move keeping us very busy.

Can I ask what dose of L-Arginine people have taken to help thicken lining? Trying to ensure I do everything I can for the lining this month and cross fingers check scan next week is good!!

@Enfys23

This study doi.org/10.1016/j.fertnstert.2008.12.062 used 6 g/day, 4 times/day orally- so I assume 1.5g 4 times a day.

That seems like an awful lot, I have only ever used 1g a day, the tablets are massive so I need to crush them and drink them. I didn't help me when my estradiol was low though, I don't think anything will help if the estradiol is low.

I think I'm feeling ok, I'm getting the steroid side effects right now though.

@VenusStarr I’m so sorry to hear your update, look after yourself and my fingers are firmly crossed for you both 💜

@Gardenlady543 good luck for the transfer, glad you’ve had good news!

I’ve had a rough time since the bad second cycle outcome. Can’t shake the feeling that we’re done, that this won’t work for us, that I’m too old and need to accept we’re not going to have kids. Doesn’t help that everyone keeps pointing the finger at me at appointments, it’s not like we started this shit when I was 39, it’s just taken years to get to this point. DH’s sperm wasn’t great and only “occasionally twitching”, whatever that means, but they seem to think that’s fine for icsi, even though icsi didn’t work and we didn’t get a single blast. Sigh. Months now of investigations and vitamins again, we’re back to square one and I’m tired. Not sure whether to have his varicocele removed, it’s only small but can’t seem to get a straight answer online if it might be worth it. Feels like a long, sad few months ahead of us. Or more.

@Gardenlady543 I'm so glad transfer day is finally tomorrow for you!

Sorry to everyone having a rough time. I wish I had words of wisdom but I don't know anything about your particular issues/treatments.

CRP rang me yesterday to say they'd discussed my case and agreed the fluid in my uterus is a concern and that I need to make a consultation appt with the surgeon in the new year after my period arrives. She's not sure if he'll suggest hysteroscopy pr laparoscopy. She said I should stop all the drugs bar the hydroxy for a while too. Although I doubt she means levothyroxine and metformin, I should have asked! I just don't understand how my niche was fixed last September (and I think it was as I was briefly pregnant twice in the 3 months after) and then not. Part of me wonders is the hysteroscopy i had to remove scar tissue this September did some damage to that area. I'm not happy about losing more time, paying another big chunk of money and the stress of time off work if it is a laparoscopy - it's my busiest time with my year 11 classes! Just having a bad day. The good news is she didn't mention doing another egg collection round on the phone, like she did when I was in the appt, so maybe prof S doesn't think that's needed yet.

Thank you all ❤️ he's OK, just waiting on hospitals and referrals. His quality of life is impacted, with pain and medication, so it's more me wondering if trying to add a baby ontop of this is the right thing to do 🤷🏻‍♀️

He did the sperm dna fragmentation last week and his results are 16% 🫥 crp said they're awful but the actual test place said it's just above average. Seeing what the availability of the male specialist is like. Does anyone's partner take Impryl? Where do you get it? Also read women can take it too, do any of you?
Dh is now feeling like our miscarriages are his fault. I definitely don't think our 2 that we tested are a dna fragmentation issue. Possibly the chemicals could be. Any maybe our last round was more impacted as we had fragmented embryos too. But don't know if that's a thing.

@thislittlebird ❤️ sending hugs. I'm 40 next year, dh is 41 soon. Now this, just feels like no steps forward, 5 back.

@seven201 I'm sorry to hear this. I wish things were simpler for you. Its very confusing that you now have complications with the fluid and your niche. And more money! 😞 are you in your tww? I definitely wouldn't stop levothyroxine or the metformin. Sending hugs to you as well.

@Gardenlady543 thinking of you for tomorrow xxx