ERA/ALICE/EMMA testing thread 2

[seven201]

Link to the old thread
https://www.mumsnet.com/Talk/infertility/4187520-era-testing-after-multiple-implantation-failures-anyone-had-it-done?msgid=110302437&utmsource=mentions&utmmmedium=email&utmcampaign=2020-10-19&utmmterm=You+have+been+mentioned+in+a+post&rei=438192#110302437

Welcome to the new thread. Anyone welcome.

Gosh @Gardenlady543 sorry about ur results. Were u still doing the weekly vaginal probiotics? Or did u just do the 10 days. I know they say that often the oral ones just don’t make it to the vagina like they should do the canesflor is vital
I hope the lab can give u some answers I had gardenalla on my result but not as high percentage

@VenusStarr good luck for ur fet! Ur lining seems on track. Hope this ur cycle

@seven201 hello! How r u? Do u think u will
Be starting soon? Hope u can . Glad all sorted with lower and u can move on with FeT

Thanks @seven201 and @Cream123

Gosh I have had the most stressful afternoon trying to take everything in and get everything sorted.

Clearly the gardnerella is resistant to coamoxiclav. The lab has recommended metronidazole which I've got, I'm also going to get some clindamycin. And I'm going to do 7 days of oral metronidazole and 7 days of vaginal clindamycin. If that doesn't get rid of it then I don't know if I'll ever manage to eradicate it. The stressful thing is that gardnerella is a normal part of the vaginal flora and clearly the stuff in me is resistant to at least one antibiotic.

I'm not going to start the antibiotics until Monday. My gp has given me a vaginal swab but I can't do it until Monday as it's Friday night now. The hope is that the swab will pick up the gardnerella and the lab will be able to detect what antibiotics its sensitive to. Hopefully that will add reassurance that the metronidazole and clindamycin will work.

I have has my head all over the place as to what to do next. I think I'm going to tell my specialist I want to go straight into the FET. I'm worried that the longer I leave it the more likely it will become bad again. I'm expecting to start the cycle around 2 weeks on Monday so that gives me a week to do the antibiotics and a week of vaginal probiotics, then I will keep doing a daily vaginal probiotic until transfer day.

@Cream123 I've been taking the vagina probiotic at least weekly and 2 different oral probiotics with the right strains in daily. This gardnerella is clearly not giving it a chance. I guess the only positive is that at least I've got rid of the other dysbiotic bacteria and there does seem to have been lining improvement at a result.

@Gardenlady543 well done on getting all that done in one afternoon! It does all sound like the best plan possible to me. Take the weekend to try and process everything as I'm sure your head must still be spinning.

@Cream123 I'm alright thanks. Still can't get anywhere with my ivf clinic. They just keep telling me they can't book me in until the doctor does my treatment plan. I'm going to ring on Monday and beg them to make the doctor fo it! How are you doing?

@seven201 that happened to me this time. U literally rang daily and ended up emailing my consultant. I actually started taking my
Oestrogen a few days before the protocol came out to me I was so desp to get going! As I had some Left over. Hope it comes to u soon. When is af due?

@Gardenlady543 I wonder if what mr trew did helped the appearance too? I would def do vaginal daily the 2 weeks leading up to whenever ur FeT ends up happening regardless of ur next Emma if u do one. It must be so frustrating to see that lactobillus at 0. I hope the metro kills that gardenella. I never rechecked mine so no idea but I also had the same bug.

I’m ok thanks. Few concerns about my placenta as I’ve had a section/ashermans and a placenta praevia and it’s over my section scar this time but I’m being monitored. Trying not to think about it!

Ps @Gardenlady543 I don’t think most oral probiotics have been studied enough to prove their survive the acid conditions of our stomach. Let alone get to our other areas.
Symprove is the one they use in medical studies as that one has got god reserch for it - have u tried it? I was taking that it tastes terrible though! And it’s really quite pricey! But it’s the best one out there

@Gardenlady543 I'm so sorry you've had these results and had so much to work out. I'm afraid I know nothing yet about these bacteria but sounds like you have had to become a real expert. I really hope it all does the trick.

Have you heard of Andrew Loosely? I'm slightly in 2 minds about him as his programme is super expensive and quite extreme but he is a Chinese medicine specialist and so has a totally different approach to dealing with these issues. Could be worth checking him out and his FB page if these antibiotics don't do the trick.

As I said, I'm skeptical about some of this but his perspective on viewing infertility holistically did make sense to me.

podcasts.apple.com/gb/podcast/for-trying-out-loud-the-infertility-years/id1462661416?i=1000457516212

I hope everything goes well with the monitoring @Cream123
For the oral probiotics the most evidence of improving gynae microflora are lactobacillus rhamnosus, gr-1 and lactobacillus reuteri, rc-14. I take femodophilus and optibac probiotic for women, both have these strains in. Plus I take the vaginal probiotics. I think until I get rid of the antibiotic resistant gardnerella it doesn't matter what probiotics I take.

@seven201 yeah my head is definitely spinning, I find everything stops at weekends so I hopefully can get a bit of a rest. How annoying about the clinic, I hope you can get things set up.

Thanks @Janefx40 I'll have a listen :)

So on another forum I've heard from someone who used a company www.fertilysis.com that tests menstrual blood and semen and then they do a consult and put a treatment plan in place. Randomly the user had very similar microflora to me and she shared her plan so I think I will try and replicate it.

@Gardenlady543 well done for finding that other forum and the lady with similar issues. Great idea to follow her plan. Did she say if it worked or is she still waiting to find out?

@Cream123 I'm glad you have the monitoring at least. Don't be afraid to make a pain of yourself and just go in if you feel you need extra monitoring.

@seven201 I looked at her recent posts and she's now pregnant. She had originally had a miscarriage and had a lot of antibiotics as part of this which messed up the microflora, then had 2 euploid unsuccessful transfers, had the microflora test and did the treatment plan and told me she did a transfer right after it without a repeat. Obviously it's not the same issue as I've already had unsuccessful antibiotic treatment. But it's still reassuring.

@Gardenlady543 It certainly is. It shows it is possible to treat (although I do appreciate not exactly the same issues). Hopefully this gives you a little faith that it can work for you. I admire your research abilities!

@seven201 I'm honestly feeling so exhausted. When I spoke to the psychologist last week she said she thinks I'm in warrior mode, she said most people are unproductive in this mode but I'm hyperfocused. I have a few friends who are psychiatrists and they said this is very normal in doctors, because we're trained to function well and problem solve in high pressure situations. Infertility is a medical issue, so I feel every second of my spare time should be spent researching and finding a solution. I was up most of last night reading research papers on microflora. I really need a good nights sleep :(

In positive news last week I joined a gym, I'd put off doing this because of infertility treatment but actually I thought it would be good for me. So I've been going every night and started doing their yoga classes. It gets me out of the house and allows me to focus my mind elsewhere for a couple of hours.

I'm not surprised you feel exhausted @Gardenlady543 I'm sorry your results came back with more worries. Are you still waiting for your nk cells?
Axouple of ladies I chat with on Instagram have used Fertilysis and recommend it.
I'm glad you've joined the gym and seem to be enjoying that, taking time out is important but it's a real struggle when you've got all this ongoing, your mind is in overdrive to fix it ❤️

Thank you @Cream123 I'm glad you're being monitored.

@seven201 I'm sorry you're having trouble with your clinic, so frustrating! Fingers crossed you get your doctor appointment soon and you can get cracking 🤞

How are you @Janefx40?

I'm not sleeping well and got a bit of a breakout of painful spots, hoping this means the estrogen is working and my lining is getting plump. Still feel really detached from the whole thing.

@VenusStarr yeah I think my NK cells will come back some times next week, that's how long it took the first biopsy. I really hope this one is normal too because I can't cope with two issues right now :(

That's good that you've heard good things about the other test. I like the look of the treatment plan that I shared. If the next transfer is unsuccessful I will probably do the test and see what 4th line antibiotic they recommend.

I'm sorry to hear about the sleep, maybe being detached is a good thing. I feel like in my last transfer I was so sure it would work and I just felt so heavily invested in everything. It was a big come down.

@Gardenlady543 gym sounds good. I'm the same in that I obsessively read research papers - actually it was quite useful during my successful cycle because it was only through reading academic journals that I discovered the clinic had made a catastrophic mistake!!! But in general it's good to find ways to relax too!

@VenusStarr sorry about the sleeping. I think that is linked to estrogen for me so hope it's a good sign

I'm fine thanks.baseline scan tomorrow for mock cycle. Wish time would hurry up. Desperate for transfer and to know which way the dice are going to roll! X

Hi everyone, had my second lining scan today. Its triple layer, 8mm+ (nurse wasn't specific annoyingly) it did look good (if I say myself! 😂) but she was happy, so transfer is booked for next Monday afternoon. Waiting for time confirmation, but will start my progesterone at lunch time on Wednesday.
I'm absolutely shattered today, just going to have an afternoon nap.

Hope you're all doing OK @seven201 @Gardenlady543 @Cream123 @Janefx40 xx

That sounds like great news @VenusStarr
Hope you have a nice relaxing nap after an eventful day!

@VenusStarr congrats! That's really good. Worth the lack of sleep!

@Gardenlady543 yoga at the gym sounds a great idea!

I'm sat in the car having a cry. Finally spoke to someone at my clinic and she says I will get a call within 2 weeks for booking but she thinks we're looking at late December (so early January for me) from when there's space due to the Xmas shit down. So pissed off! My last transfer was June/July.

@seven201 what?! That's ridiculous, aren't you going to be ready to start a FET in about 4 weeks time? Why do you need to wait for a call? Surely they know what to prescribe in your protocol?

@Gardenlady543 I'm cd7 already. She says November is looking nearly full already and they have to work through the list in order so she thinks I won't get in this year. She said is that ok and I said No! Then cried at her. Don't think it will make a difference. I had to wait 6 weeks after my last failure to get a review appt. I think they're understaffed. Part of me thinks I should move my 2 embryos but that all takes time and mental stress too. Aghhhhhhhh.

A few months ago a dodgy mechanic charged me £850 for a new radiator and broke everything around it so now I have to pay a different definitely not dodgy mechanic £750 to fix it! And yesterday I accidentally ruined my carpet when trying to clean it and our tumble drier is on its way out. I am having a crappy day! I'm still hiding in my car. I might order delivery pudding later!

Oh @seven201 I'm sorry, it's so tough trying to dealing with this life stuff with IVF.

That definitely seems unfair, can you put through a formal complaint? Someone else was with care and did that after a consultation with a clinician that didn't know their history and everything got sorted quickly. I'm sure that if you put in the complaint how you have been through all these investigations for months on end so you want to do the cycle ASAP that they will need to consider it, I often use the term "prolonging the agony" because these delays cause the horrible agony to go on for longer than necessary. If you did chose to move the embryos I've heard people being able to do it quickly, I heard of someone being provided with the equipment by their clinic and taking them straight form one clinic to the other, if you moved you'd have to pay for the FETS though and your with access aren't you, do you still have another fresh cycle left in the access package?

@Gardenlady543 I sent a complaint email before when they pushed back my FET dates and did get it brought forward again. It's so hard because you don't want to be known as the one who is always kicking up a fuss when you're at your most vulnerable being prodded in intimate places. I think I'll give it a couple of days and then send a complaint email if I haven't heard from them. The nurse did say she'll make a note when I went on a bit of a rant at her (I wasn't rude to her). I just think when you pay so much blooming money the timescales shouldn't be so shitty!

I'm with access yes and this is my last round. It doesn't make sense for me to move the embryos as it would cost a lot. I did say to the nurse I think I have to do my treatments within 6 months and she's going to check with the admin dept. I think I've got to focus on the fact that my adhesion is gone and that my niche has been tidied up so trying naturally isn't hopeless. I just don't feel like I have the energy to kick up a fuss at the moment, I'm in the wallowing phase. I might get angry later in the week though!

@seven201 I checked with access and they said I can take as long as I need between cycles so don't worry about that. I think you have to have complete the program within 5 years though from when you started.

I would put through the complaint if I were you, things need to get sorted for you in the next couple of weeks, a 2 month delay in the transfer cycle is not fair.

@seven201 it sounds like everything is getting a bit overwhelming, but I'm sure when you have some fixed dates and plans in place things will improve. And yes it's so amazing that you've had the surgery with such a good outcome so definitely focus on that!

@seven201 oh that must be so frustrating. I can understand why you're upset. I can understand why you might not want to complain too - I'm sure they wouldn't hold it against you (the doctors and nurses probably wouldn't even know) but equally there are only so many battles we can fight! Sorry you've had such a tough day x

@VenusStarr great news about your lining and the transfer. Not long now!

Xxx