ERA EMMA ALICE testing thread 8

[Gardenlady543]

@2021ivfagain @kerrym87 @Janefx40 @seven201 @thislittlebird @Spin101 @Enfys23
@CailinInUK @BewilderedBee @Loz2467 @Lori2022 @VenusStarr @clhiu @Faithhopelove83 @APSR @ChickenT2b @Mina209 @IVF22 @Lizzybeth1988 @AM08 @Fluffykins33 @Sar1010

Continued in from thread 7 :)

@CailinInUK I feel like you have to succeed at some point! I remember the last batch you got a euploid didn't you but were unlucky that it was at risk. You can clearly still make euploids. I'm really hoping you win the statistic lottery and all 3 are euploid and risk free, you never know!

That's exciting @clhiu did you have the blood tests taken then, did they do anything else like biopsies? Keep us updated with the results and their opinion.

All good with me, as far as I'm aware anyway. I also finally managed to speak to the surrogacy doctor, it's all quite unclear what happened with communication, from their perspective the pregnancy had been lost on the Friday but I obviously had not been told that. The good news is that our surrogate is feeling well after the aspiration procedure, I had been struggling to get hold of information on how she is which is very important to us and so at least we got to discuss this.

How's everyone else doing? Any important appointments coming up?

@Gardenlady543 My last swab test was mostly normal with high lactobacillus Jensenni and some crispatus but I’ve been advised not to take antibiotics for the enterococcus faecalis. I’m taking two strong garlic tablets a day plus extra probiotics for a potential uti. I don’t really have symptoms. My gynaecologist doesn’t even think it’s a proper infection. Garlic tablets fight a urine infection and are a natural antibiotic apparently.

My nutritionist said I fought so hard with metronidazole to get rid of atopobium vaginae that it has caused the opportunistic bacteria to get in. The problem is if I take metronidazole again next cycle I could cause an overgrowth of enterococcus faecalis. If I have symptoms, I might ask to take oral metronidazole at the beginning of my transfer cycle but if it comes back I will just have to use canesbalance if it is after transfer.

How many times have you taken oral metronidazole? I think my issue is lack of oestrogen as well.

@2021ivfagain I think probably about 4 times, one long course and then shorter courses when my pH had gone up without symptoms or pre FET cycle. But I didn't get any other bacteria after as far as I'm aware.

Thank you everyone. It’s been confirmed it’s all cancelled now as they didn’t move things forward in time. So I have to contact with next day 1. I won’t say too much on here but have taken things further. Thanks for support. Has anyone been on dhea longer than 12 weeks? I’m facing that now. Not sure how to go about it.

Wow you’re awesome powering through @CailinInUK .

crossing fingers for some positive next steps @clhiu

@2021ivfagain hope these microbiome issues get as stable as poss for the transfer

@Gardenlady543 🤞🏼won’t say more. When’s the next scan (if you want to tell us) Glad you could find out a bit more about what’s happened and info on welfare of the surrogate too.

@Gardenlady543 gentle congrats on your scan all going well and to plan :) everything crossed. Sorry to hear you’ve had it all confirmed from your surrogate and managed to check in with that.

Im trying to have a little read back through to see where everyone is at.
@Enfys23 I’ve struggled at times with the communication from my clinic. My consultant doesn’t even know a lap is on the cards and my review app with her is potentially my surgery date.

I was thinking about the lap and I just need to go for it now but completely worrying about this area in question as it seems like a loose loose situation due to them saying I can’t have it removed as I run the risk of major scar tissue. But thinking about it that’s likely linked to the adeno. Because if I have that I will likely suffer lots of bleeding in that kind of surgery. So potentially it’s that reason which is a no go! As @Gardenlady543 it seems to of worked for you although you say you changed a few things.

Hoping he will do me a hystereoscopy as well and it’s another opinion and the cavity checked again. Post ovulation I’ve had small black areas appear in my lining - never been seen since! Which is odd but then again all my scans have been pre IVF cycles so no reason to scan afterwards but still plays on my mind.

I’ll mention the area on Monday and see what he says.

@Enfys23 that is really upsetting and frustrating, we have so many delays it is ridiculous that this happened. Glad you have had it escalated, hopefully they will get things sorted better for next time.

Next scan is Tuesday and that will be 7+6.

@Loz2467 the lap is a really good idea and is at the very least an investigative procedure. You will have to trust that your specialist knows what they are doing and will respond to an issue in the best way. They are trained to know when to treat and when not to. At the very least you should come out with an answer as to what they found. What are the dates is the op on Monday or is that a pre op appointment?

@Gardenlady543 I might just do oral metronidazole next month. I had urine dipped yesterday and they said it was fine but not enough to get properly tested. I will need to do another sample tomorrow. I got my bloods done, so hope clinic accept them. Starting to get bad discharge. Surgery also gave me more swabs but they never pick up anything. I think atopobium vaginae has come back. I’m stressed at present. I found out today that my parents’ care will stop in 2 weeks as care company can no longer cope. We obviously have no replacement at present but my Dad is vulnerable due to massive stroke 3 years ago. It’s bad timing as I want to do my transfer in June but everything is going wrong.

Thanks @Gardenlady543 . Yes they were able to take bloods for most of the tests on the same day of the appointment, like 15 vials or something ridiculous 😳. Except for FSH, LH and Estradiol that needed to be timed with the start of my next cycle so going to a lab in London when my period start, likely tomorrow.

@Enfys23 that is really rubbish, I hope they don’t mess you up next time and something can come of your complaint.

@2021ivfagain I’m really sorry to hear about the ongoing worries with your parents, it must be really difficult to navigate care for them and ivf at the same time. I hope you can sort out alternative care soon and your transfer can still happen in June.

I’ve a question for those on here taking care of your microbiome, especially those concerned about low lactobacillus please. Do you ever wear tampons during your periods or avoid like the plague and stick to sanitary towels instead? Are they supposed to be bad for your microbiome?

@clhiu tampons, I avoid like the plague because of the microbiome, I used to use them. I only use pads now and also the period pants you can get.

Oh dear @2021ivfagain so your parents have carers and they're stopping so you'll need to help them?

@Gardenlady543 very happy for you! All the best u deserve it !
couple of questions:

• were you adviced to take probiotics all throught the ET and pregnancy? I was only told to take 10 days prior to period and stop , now my FET is next week and i wonder should i have continued canesflor if it doesmt harm anyway?
• also different topic: do you know if we can still dye our hair (ammonia free product of course) prior to FET? :)

thanks!

@Gardenlady543 I’m just hoping by Monday I have a surgery date. I’m so glad I didn’t go into another FET as I’d be starting estrogen on Saturday and I’ve got brown / pinky spotting. I never got any of this in Feb and March on the prostap then and that was after a fresh cycle so you would think everything would be more irritated then than now after my FET. I just feel really down about it. Like why has my lining started coming apart? :( this whole thing feels relentless. I called my clinic. “Don’t worry about it”. Okay great… as if I’m not worrying! I wouldn’t mind an explanation as to why it might be happening!

@Mybabydream

I decided to do the daily probiotics in the FET for a few reasons:

1. My friend's fertility specialist told her to do it up to the transfer.
2. This research protocol intents to use vaginal probiotics up until the first scan bmjopen.bmj.com/content/bmjopen/10/10/e035866.full.pdf
3. I took daily probiotics in my last FET and stopped pre transfer, but my pH went up after and I had a chemical so decided this time to keep going. I didn't take them the day before and day of transfer. But took every day after the bleed and then restarted post transfer.

Oh I'm sure there is loads of stuff out there about hair dying. I personally stopped anything and everything for fertility treatment. I'm very boring!

@Loz2467 I totally get this, my operation in late August was brutal and it felt particularly unfair to be doing it after a load of unsuccessful Ivf, it felt like I was starting from the beginning even though I'd already tried several transfers. I think with fertility treatment we must aim to explore and resolve issues and your spotting definitely comes under that, it's the right thing to do to explore it. I really hope you get answers.

@clhiu second that, avoid the tampons, I only use the pads that are nonscented bleach free etc. and pants (and wash them with ecover zero).

@Gardenlady543 I’m so happy your scan went well.

I have just had my fertilysis results back and I am in shock. Is there any hope at all or are we completely doomed?
I don’t really understand the difference between dqa and Kir but clearly both have come back bad. I can find minimal info on complete dqa match which basically says sperm donor or surrogacy required. What about KIR?

Anyone have any information or advice at all?

I’m absolutely in shock :(

@ChickenT2b so the HLA DQA1 I know quite a bit about, me and my husband are a full match. Your result just shows your genes. Your partner should have got an email too, can you upload that one? There is a wide range of views on this from RI. Dr Sher has the most negative view he thinks it will never work without a sperm donor or surrogacy. The late Dr Braverman felt it made no difference at all, if you at the forum on their website they say several times that all their full match patients had live births, I think except one with an egg quality issue. Some RI don't test for it at all. I looked at it like a death sentence for the infertility journey, but I am pregnant and the two surrogates we tried aren't. I actually looked into the frequency of genes, one of the ones I have (that my husband also has) is present in 25% of people of our race, so sharing genes has to be very common. And when we treated two surrogate candidates for their hlaDQA1 genes- one was a full match (having the exact same genes as me and my husband) and the other a partial match. Statistically I find that people who test for this: 25% are a full match, 50% are a partial match and only 25% are no match.

The KIRS I know very little about.

The LAD, they alway report it as normal even though it's not. You only get the antipateneral antibodies after a full term pregnancy. It's felt these are protective. This is why I had 5 x LIT, Dr Gorgy likes the IgG to be above 50%, ideally above 80%.

@Gardenlady543 the sheet they’ve uploaded for my husband is exactly the same as what’s on mine so not sure what it all means. This is a snapshot from his results, exactly the same as what they uploaded for me 🤷🏻‍♀️.
What I’ve read online pretty much says sperm donor or surrogacy but it’s hard to find much information at all.
What did your fertility clinic say about the results? And are you under an RI? I guess that should be my next step?
I too suddenly feel it’s like a death sentence and there is no longer any hope.

@ChickenT2b

Ok so both you and your husband are 0102 0102. The Australian definition would make this the fullest match you can get. It means that both you and your partner had parents who were at least a partial match, so it clearly can't matter that much or how would you have both come into existence!

There is a fb group called DQ alpha support group international.

There is also an Australian one, you'd have to make a profile saying you are from Australia to join that. But Australia has a lot of success.

I am under Dr Gorgy, I gave him my results from fetilysis and he undertook the consultation based on the results. He likes matches to have pooled donor LIT. And would recommend a immune protocol for you. He likes to do the endometrial immune biopsy before advising.

Most fertility specialists put no weight on this at all.

@ChickenT2b it's also worth adding that those RI that do believe in it often think that you can have several successful pregnancies and that the immune reaction builds up over time, so after 2-3 children a couple then starts to have issues trying to conceive another.

@Gardenlady543 thank you so much for explaining.

I wonder if the fuller the match, the worse the prospects 🤷🏻‍♀️.
I’ve requested to join the group so will hopefully be able to get some further insight.
Ive also booked the follow up consultation with Fertilysis to see what they have to say and will look to book in with Dr Gorgy also.

I wish there was more evidence out there, the opinions seem to go from one extreme to the other.

I’ve spent all afternoon in bed in despair having researched online whilst my husband and step children have gone on our camping trip I was so looking forward to. Just couldn’t bare to act normal after yet another blow 😞. How do you go from being pregnant, to miscarrying, almost starting ivf, discovering a hydrosalpinx and planning surgery, to now this. All in one month!

I haven’t even properly looked at my microbiome results which is also not good! Why would they suggest treatment for Candida when it hasn’t been detected?
I also self prescribed metronidazole last year so now sure what use taking it again will be 🤷🏻‍♀️

@ChickenT2b I wouldn't bother with fetilysis for this, I paid for the immune result consultation and he said he had to do a literature search as he wasn't sure of the options for a full match and would send a plan. He never sent the plan. Just book in with gorgy and get all your results sent across in advance.

You could do the consultation with them for the microbiome treatment but they have been quite clear about the antibiotics so I wouldn't bother.

You can order vaginal clindamycin and oral metronidazole form online pharmacies, I would take both together for 2 weeks, alternate a daily antifungal (clotrimazole 100 mg pessary or cream) and a daily vaginal probiotic while on it. After use balance active for 7 days while using a vaginal probiotic, take the probiotic for at least 10 days. Then use daily in a transfer cycle like I did. The antifungal is for use with the antibiotics. Also start taking an oral probiotic daily if you don't already: bio me femme v, femdophilus or optibac for women.

When is your operation for the hydrosalpinx? If you can get the treatment in pre op that would be good. You might want to retest the microbiome after surgery before starting IVF as surgery can mess it up.

I am sorry to hear this @ChickenT2b It must feel so despairing right now and I can understand not being able to face the trip but equally it’s another loss to not be able to go. I hope you get a consultation ASAP to discuss next steps. From the reading around immune issues I did before this cycle it very much seems controversial re the match and most specialists don’t set much store on it it seems. It sounds like Dr Gorgy can give you some sensible plan though. I think the Candida treatment is more as a precaution as the antibiotics will mean developing thrush more likely.

I just wanted to thank everyone who vouched for The Fertility Medication Centre. I’ve just saved a whopping £600 vs clinic quote. I did get a quote from Asda but I must have got unlucky and they weren’t very helpful at my nearest (which is still 40 mins away). They said they can't order those type of meds and then when I explained why I’d come to them started asking me if I knew how expensive they all were (they’d looked them up on their system m). Haha as if I didn’t know. Anyway thanks again, any savings in this journey are hugely appreciated.

@Gardenlady543 Yes. Sorry for the delay but been stressed with everything going on. Care company keep charging my mum and dad so much money and they have been threatening to drop their care for the last two years. It’s just bad timing but might have found alternative care.

I also had a stress with blood tests today as they didn’t do all the tests I requested even though I went in with paperwork, but they did sort it out eventually. CRGH are so strict with format of the results.

Has anyone ever used two canesbalance in one day to help with ph balance? I did start to use Bio me femme vaginally but felt it did not dissolve as well. I’m just trying to vary my probiotics and it has crispatus in which my nutritionist says I need to build up. Apparently, Bio me femme can be used orally and vaginally. I’ve ordered more probiotics but everything gets expensive.

@Enfys23 Good luck with your cycle.

@CailinInUK I feel like it’s difficult keeping track. How are doing with your next egg collection? Sorry if I’ve missed something.

@ChickenT2b Sorry about your results.

@ChickenT2b I have read your post again and I am sorry you have been through so much in a month. I was told when I had candida to have a low sugar/no yeast diet by my nutritionist. She also recommended bio me s boulardii which kills candida https://invivohealthcare.com/products/supplements/bio-me-s-boulardii-60-capsules/. I had to take 2 a day. She also said garlic tablets as well buy that’s up to you. I’m having Allicin (garlic tablets) at present to treat enterococcus faecalis and I take 2 a day but treat them like antibiotics so I space out probiotics.

Also canesflor is good for thrush. There are also lots of other good vaginal probiotics.

The nutritionist said eating things like wraps instead of bread, if you eat bread, and nut butters.

@Gardenlady543 all any tips for FET? How to prepare , what to eat before after , what to avoid..

@Mybabydream not really, I have done cycles where I have ate the most healthiest diet ever and not implanted. The only thing I did that most people don't is the daily vaginal probiotic and also getting the protocol right with modified natural using low dose stims. I also took these vitamins: methylfolate 1g, vitamin D 2000 units, coenzyme A 200mg, vitamin b complex, prenatal vitamin, probiotic.