ERA EMMA ALICE testing thread 7

[VenusStarr]

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

Hi All, I am new here. I had a 12week miscarriage last March and have been unable to conceive since. Previously conceived naturally twice in the first month of trying (1 live child, and 1 baby I lost last year at 12 weeks of pregnancy). I was diagnosed with chronic endometritis in October and have done 3 biopsies and two rounds of antibiotics (doxycycline, metronizadole, and levequin). My third biopsy still showed positive for CE. I also have had a hysteroscopy and EMMA/ALICE test which showed no bad bacteria, but also no good bacteria, which is shocking. I am desperate, DESPERATE, to figure out what my next steps should be here. More antibiotics of a different kind? I am struggling and feel hopeless on how to treat this CE. If anyone has any advice, I would appreciate it. I do see an RE at a fertility clinic since I've been struggling to conceive since my miscarriage. I have abnormal period bleeding in the sense that I don't have much flow, but moreso stringy blood coming out and clots when I go to pee. Has anyone ever experienced this issue? That is telling me that I still have the infection and obviously my body did not respond to the two rounds of antibiotics. I'm desperate for help.

@2021ivfagain I’m so pleased to hear your protocol thickened your lining up! Thank you again for sharing. It really gives me hope 😊
Was the reason for FSH being low enough to prevent natural ovulation?

Sounds like a few of you are at CRGH. Have you had good experiences? They seem to be really thorough and provide tailored treatment plans. I’d like to consider my options for if the next transfer doesn’t work. I would need to travel for an hour each way to get to CRGH and I don’t know if that will be really stressful with monitoring scans etc.

Have any of you been taking progesterone injections? I’ve had an allergic reaction to Lubion after I stopped them (very weird) so don’t think I can take them for my next transfer. I hope there’s an alternative!

@Mina209 I’m so sorry for your loss and your difficulties since. I don’t really have any answers but wanted to ask, if you don’t mind, how you were diagnosed with CE in October? What was the test?
You mentioned you got the EMMA/ALICE test done since. What did it show if no good or bad bacteria? What was their recommendation?

@Spin101 We did IVF IMSI for first child due to male factor infertility. My husband has lower morphology but now at 41 my egg quality is bad. As soon as my fsh rose, my egg quality declined. So as we already have a child and I gave birth at 39.5, we went straight to CRGH again, but didn’t expect the massive delays. I do not have low fsh; I do oestrogen priming to lower it before I start stimming in the frozen transfer cycle. I have high fsh. The only reason I am triggering is to help my body produce more if its own progesterone. I probably would ovulate on my own but when doing a superovulated or modified FET cycle you also trigger.

I travel to CRGH from Plymouth and it takes 4.5 hours there and about 5 hours back. It’s stressful but I can’t go anywhere else.

@CailinInUK hi! So in October I had a biopsy that was sent to test for chronic endometritis through ReceptivaDx. They test for the CD138 biomarker, which is indicative of chronic endometritis. I tested positive for CE that way. Then with my second biopsy, my sample was sent to ReceptivaDx again as well as Igenomix for the EMMA/ALICE test. The CD138 test came back positive again for CE, but my EMMA/ALICE results showed no bad bacteria, but also no good bacteria. Nonetheless, my RE had me take another round of antibiotics. I did a third biopsy and still tested positive for CE. So now I'm at a loss on what to do here. I clearly have some microbiome issues going on and am still having abnormal period bleeding =/ I feel so hopeless.

@Mina209 I’m sorry you’re going through this. I found Invivo helpful when I had discharge symptoms which turned out to be atopobium vaginae and gardnerella. I sent swabs last year to my doctors and they said everything was normal when it was not. The only issue is Invivo take 21 working days for the results to come back and you also pay a nutritionist to analyse your results. Anna Firth is my nutritionist. You need to contact Melanie Brown nutrition first of all to see if they can help you. I don’t know if this will help you, but it’s worth a try.

@Gardenlady543 I’m just over a week away from transfer as I think I’ll be possibly triggering tomorrow. Do you think it would be ok on cd12 today to use vagibiom with canesbalance tonight? Although they both have prebiotics, I think canesbalance is stronger.

I hope you’re doing ok on the steroids and rest of your medication.

Just wanted to pop on and say thanks for everyone’s messages and advice, good luck to those with appointments/monitoring/triggering this week. And hugs to those have especially hard times at the moment ❤️
Sorry can’t reply more thoroughly, I’ve had a really prolonged migraine and only just coming out of it but still really meh - all premenstrual fun.

@CailinInUK yeah, I would be interested to hear how your cycles went. I’m finding it hard to believe a different outcome is possible as I’m getting older.

Sorry you had to read the post Morton report, that must be hard. What’s PGT-M? I’m aware of PGT-A.

@Enfys23 i also have a (mild to medium) menstrual migraine today, we spent two hours in the hospital with my head pounding, most of which was in the waiting room 😩.

@Gardenlady543 lovely looking brûlées!

I’ll try not to ramble on too much but we had our guys appointment today. Backstory of this is, we had our failed nhs cycle review in November and we asked what we could do next, specifically, could we see their specialist for dh. He’s one of the top andrologists and there’s only a few around, we saw the other one in 2021.

In December there was some confusion because we were booked in with a woman in February (today’s appointment), I kicked up a fuss because that was not the guy and suddenly we had two appointments: one in January with urology and today’s andrology one in the ACU. The one in January was with a fellow. Didn’t order hormone tests, only ordered a varicocele scan for DH. Dh had the scan at the weekend. The fellow told us DH’s sperm were fine, there were plenty and we should conceive naturally 🙄🙄🙄. Also banged on about maternal age blah blah.

We get to the ACU today for the appointment and guess who is there!!!! Oh, it’s the fellow again. We just laughed and said this is going to be useless, he’ll just say dh is fine again. We filled him in on the antisperm antibodies, he said DH’s varicocele is tiny and a non-issue. He asked if we’d had hormone tests done for dh (🙄🙄🙄🙄🙄🙄) I said “yes, we paid for them privately after we saw you” and he said “oh, I could have ordered them for you” (🙄🙄🙄🙄🙄). Anyway, I turned round and said look, no offence to you but we’re frustrated because we were told we would be seeing the main guy and we have not seen him. He goes away and does some stuff, comes back and says go back to the waiting room and you can see him soon!!!!

Then we see the main guy, the sperm legend himself and he did not disappoint. He’s ordered every test he can for dh on the nhs and the ones they don’t do he’s asked his private secretary to arrange with our private clinic. He gave me his PA emails and said email them all the test results, told us to email the new DNA frag due in a couple of weeks, he’s even ordered karyotyping for dh because it’s a complicated case. The only ones he couldn’t do were reactive oxygen species and hidden infection tests, but that’s fine, it’s such a huge help financially to have seen him. He said the standard nhs tests are insufficient in complex cases, essentially, which we knew, but good luck getting anyone else to admit a basic SA tells you sod all.

It was honestly like night and day. From that first dude to the next one was just an incredible difference. Couldn’t really believe it, we walked out shocked to the core to receive proper care and just incredibly relieved someone is helping us. I think he said he’s looking for the cause of the antibodies, and he usually can find something. Told dh only to take impryl and no other supplements too, including stopping vitamin c which can cause sperm some damage, and we’ll hear from or see him in a month when all the results are back.

I may have rambled, apologies 😂

@2021ivfagain you’ve provided me with more insight that I could ever find on the internet. Thank you ❤️

Are the probiotics to treat specific conditions or a recommendation to create an ideal environment for implantation?

Aww you poor thing, that is a ridiculously long journey!! I’m sorry that’s how long you have to travel for to get treatment

Regarding acupuncture, I went to my local acupuncturist. He isn’t a fertility specialist. Would you recommend seeing a specialist? I’ve done so much research into specialists and really struggle with limited reviews on google. I also hate that it’s double the cost of going to my local one.

How are you feeling about your transfer?

@thislittlebird it’s must be such a relief to finally see someone who knows what they’re talking about and can hopefully provide you with the guidance that makes a difference!

@seven201 it all feels a bit hopefulness for me, I am trying not to focus on this being my last good embryo. I guess I may as well try.

@2021ivfagain there really aren't rules, just try and look at what you've got available and decide when to take which ones.

I take
Vitamin D 2000 units
Ubiquinone 200mg
Prenatal
Methylfolate 1g
Vitamin B complex
Oral probiotics

I also have some calcium powder and I add it into smoothies. I used to take omega but I am worried as one is more inflammatory and I think the intralipids is the same kind of thing, so I'm not taking oral omega.

Welcome @Mina209 some people say the cd138 is more accurate to know if there is endometritis. It's hard to direct antibiotics without knowing what bacteria is being targeted. You could try menstrual fluid testing with Fertilysis to see if that picks anything up.

I've seen this protocol used abroad for endometritis of unknown cause;

Ciprofloxacin 500 mg 1 tab twice a day for 7 days then ofloxacin 500 mg per day for 5 days

Oral probiotic

Fluconazole 150 mg per day, once a day for 5 days

Suppositories Viburcol 1 suppository rectally for the night of 12 days

Vaginally: suppositories Neotrizol 1 at night, vaginally for 8 days, then Tamistol for 10 days, then Gynoflor for 6 days

@Spin101 I react to utrogestan, I did cyclogest, lubion and Pio (prontogest) last cycle but this time I'm doing pio and cyclogest.

Get well soon @Enfys23

@Mina209 I’m so sorry for your loss 😔

I have PCOS and have almost non existent cycles now unless I’ve had treatment, for example last proper period was after EC. I went on the pill before FET and my bleed was so light. It mainly looked like dried old blood. I have the stringy blood and clots come out when I pee too. Is that indicative of endo?

I had a lap last year and was told they treated a small about of endo. One of my concerns is that it has come back.

I haven’t had the detailed tests you’ve had so am unable to comment on those, sorry.

@Spin101 endometritis is inflammation of the endometrium usually caused by infection, sounds similar but different to endometriosis.

@Mina209 welcome to the thread and I'm sorry to read your troubles. I'm no expert on bacteria so will leave that to others to advise. Garden knows her stuff in this area. She's written a very detailed Reddit post I believe that would probably be worth finding.

@Spin101 I have lentogest injections when doing ivf. No idea if it would still cause you a reaction though.

@2021ivfagain exciting that you're nearly at trigger stage!

@Enfys23 sorry about the migraine.

@thislittlebird I'm so pleased you got to see the best person. It's so wrong that it's pot luck who you get. Well done for pushing for him.

@Spin101 I've seen acupuncturists in the past and always used one who's listed fertility/infertility in their services list. I definitely wouldn't go with someone who isn't trained in fertility, they could do more harm than good potentially.

All we can do is try @Gardenlady543. You've certainly put your all into it, so shouldn't have any regrets.

@Gardenlady543 Thank you. I was just worried I shouldn’t take vagibiom and canesbalance too close to trigger as I was going to take them both tonight. Transfer won’t be until next Tuesday or Wednesday. I think my ph is raised but I suppose it would be as I’m close to ovulation but feels uncomfortable.

@Enfys23 I hope you feel better very soon

@Spin101 With acupuncture, I saw an acupuncturist who had been practising for nearly 40 years before I got pregnant with my son, but he was not a fertility acupuncturist. They are all trained in the same points of acupuncture as in keeping womb and feet warm and checking tongue/pulse etc. However, I would talk to them about when they use the heat lamp.

The probiotics are to put back lactobacillus and I use canesbalance as it helps to balance vaginal ph. I’ve had gardnerella in the past so I want to make sure I have enough probiotics, but it’s difficult when getting close to transfer. My consultant says I should only take canesflor after transfer and I should only take them if I need them.

@Gardenlady543 thank you for clarifying! I read it as endometriosis in my tired state and I haven’t heard of endometrisis 🙈

@2021ivfagain do you need canebalance with vagibiom, I thought vagibiom has prebiotic, probiotic and acid in it.

@Gardenlady543 It does but there’s no glycogen and I’ve noticed when I take the two together (vagibiom and canesbalance) I feel really good. I just wondered whether to take them tonight and tomorrow, then just use Flora femme but stop 1-2 days before transfer. The issue is I’m experiencing vaginal dryness today and discomfort even though my lining is getting thick. I’m cd12 and lining is 11.1mm. The glycogen feeds lactobacillus I think. Do you test your vaginal ph just before transfer? Should it be 4.5 before transfer? Sorry for questions. My body is getting old. I’m nearly 42 now.

@2021ivfagain My acupuncturist used the heat lamp every time I went (6 sessions) and sometimes it got a bit too warm that it felt uncomfortable. Are there any reasons they shouldn’t use it?

You ladies have a wealth of knowledge, it’s amazing! Thank you for sharing your experiences. It really challenges me to understand why my lining is so thin and not settle for a transfer at 4mm again

Oh gosh @2021ivfagain you are testing my old school biochemical knowledge today! Is there going to be a difference vagibiom has oligofructose and other things have glycogen, is one better than the other? I don't know lol. If you want to use both go for it. I would probably hold off with these ones pre transfer time though, so yeah flora femme then rather than the acid stuff. I stopped measuring pH pre transfer until I had that freak out in the chemical where my pH had gone up. We need to catch a break!

@Gardenlady543 I’m sorry and thank you for your help. I suppose also the vaginal dryness is weird and worrying. I don’t know what to do if I struggle to insert probiotics near transfer. I didn’t have it last month.