ERA / EMMA / ALICE testing thread 5(!)

[VenusStarr]

Just setting up a new thread as we're coming to the end of thread 4.

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22

❤️

Hi Ladies, hoping for some advice as I’m really feeling at a loss.
I’ve had two miscarriages this year. One missed at 13 weeks (heart stopped 8.5 weeks) and one chemical.
Im planning to take doxycycline incase I have endometritis. I am also concerned maybe my lactobacillus is low (used to get BV). I take an oral probiotic and will start taking canesflor.
I don’t currently see a fertility or recurrent mc specialist. Should I see prof Shehata? Any other recommendations? Will they administer the Emma/Alice tests I keep reading about?
Anything I should do?!
Literally feel so alone with this and there is clearly a lot of help out there privately it seems so unfair that we are just left to figure things out by ourselves. Not sure where to go for one to one help.
thanks and good luck to everyone x

Hi Ladies,

I was on the older thread but a few things have happened by then and I wondered if anyone has any advice.

Since I last posted I had a hyterscopy in May which didn’t find anything. No polyp. Everything looked “normal”. He assured me it was a therapeutic procedure and it should stop the week of brown spotting before my period. I was convinced I had endometriris. Anyway the biopsy came back that I didn’t and my lining was in secretory phase.

Next process is medicated cycles. I’m going into my third one. It’s clomid 100mg days 2-6 and then estrogen days 7-11 then cyclogest pessary from 3 dpo until testing. I’ve just lost all hope. After this is IVF in Jan.

im just concerned as when I had my scan back in January which was my first at the private clinic. My lining was only 7.2mm and it wasn’t triple layer but it was 5 days past ovulation so I believe it shouldn’t be triple layer because of the progesterone. I’ve never had a scan pre ovulation but I’m assuming I’ll have a thin lining if it’s only 7.2mm and “not very clear” 5 days after ovulating.

I’ve been TTC now for 16 months since our MMC at 17 weeks in Feb 21.

The brown spotting - luteal phase defect started last July and it took me 12 months to get someone to listen and give me the cyclogest to try. So I don’t know if that 12 months have been a waste of TTC because I’ve been brown spotting for a whole year from 5 dpo or 7 dpo etc.

Just worried my lining won’t cooperate through IVF and maybe the clomid isn’t helping and I ovulate on my own anyway. He’s just “boosting” to try and get 2 eggs per cycle.

Thanks so much ladies

@Gardenlady543 I'm glad you had a good chat to a friend and have another counselling session soon. Your dh sounds quite like mine. He doesn't address problems and did an apprenticeship and will be working for the same company in the same role until retirement most likely. I hope your dh pulls his socks up!

I just had a bizarre conversation with my dh. We were doing the big drive home from holiday and I was saying how I can't wait to one day stop taking all the medications and pills (take up a whole bag these days). He said "when you're ready to stop you can, I'd be fine with that". After questioning it turns out he thinks it would be fine to stop ivf, stop miscarriage/immune treatment and just try naturally. I explained that I've already had 4 miscarriages now, so I'd rather have treatment to reduce that risk. He was just so casual about it, like it was no big deal.

@ChickenT2b sorry to hear of your troubles. I don't think that would class as recurrent miscarriages, due to one being a chemical (as they're quite common sadly). If you want tests though I don't see why a clinic would refuse to see you though, as you'll be paying presumably. Be aware, these tests take a long time to do and you're not 'allowed' to try naturally in the meantime and they're very expensive. Personally, if I were in your shoes I'd carry on trying naturally. I'm not in your shoes though, so feel free to ignore me! I don't know if the CRP clinic would do the Emma and Alice (you wouldn't need to era as that's for ivf and you didn't mention ivf). You might be better off doing the fertyliss test that gardenlady did. Starting canesflor is a good idea.

@Loz2467 I think the lining compresses a bit after ovulation, so I wouldn't worry too much. 7.2 isn't that bad anyway. Clomid can thin lining a bit btw. If I were you I'd be getting a scan (even if you have to pay elsewhere) before ovulation on a natural cycle to see how things are normally.

@seven201 thank you. I did think to ask Care to do my a scan just to check follicles and lining. It is odd this luteal phase defect came from no where. It’s not like it even started straight from my miscarriage. I’d kind of understand if it had. It was 5 months later. All thyroid etc is fine. Well it crept up to 2.9 last cycle which isn’t great. It’s usually 1.5 or 1.4 but it was my first on this ton of hormones which I’ve heard it can alter the TSH. I was also thinking to have a months break from the clomid because of the lining issue and go from there but still take the estrogen and progesterone that cycle. I need the cyclogest else I’ll start spotting way early. I don’t know if it’s “weak ovulation” where there’s something with the egg and follicle. Literally so much to think about :( I didn’t have a problem conceiving our baby we lost - it doesn’t make any sense. Initially because we lost her because of an infection I thought it had done “damage” but then he said the lining “looked fine” but maybe it’s changed in the way how it’s cooperative with the hormones? I don’t know if that’s possible from an infection?

Sorry about that with the conversations with DH. It’s so different for them isn’t it and when you know it’s not possible any other way you keep going don’t you. We had a rough week last week and I even said I’m worried if we start IVF that I won’t have the support I need. It’s already bad enough with the clomid crazies and that’s nothing compared to the IVF meds.

Thanks @MyEasterEggs , this is all very tough.

@ChickenT2b I wrote a post about the microbiome www.reddit.com/r/infertility/comments/rwsxwy/theuterinemicrobiomeemmaalicemenstrualfluid/?utmsource=share&utmmedium=iosapp&utm_name=iossmf
It's up to you if you think seeking a specialist for some tests would be helpful, I think we’re all under fertility clinics here, I’m sure most of us here have only found out about the various tests and options by researching ourselves though.

@Loz2467 I’m not sure about the causes of mid luteal phase bleeding did you specialist tell you any causes. In this current cycle my lining was 8-9mm pre ovulation and I have thin lining post ovulation eg 5mm. Anything above 7mm pre ovulation should be fine and it’s expected that it will contract a bit after ovulation.

@seven201 What your partner is saying seems to be how my partner is expressing that he feels. Happy to go along with things but also doesn’t mind if we stop. But realistically this is unlikely to result in a pregnancy, it will just stop the constant cycle of treatments and their partner feeling ill and they hope this will mean normal life will resume. I don't think it would though if I stopped now.

@Gardenlady543 thank you for your help. He didn’t specify why you can all of a sudden get a problem with progesterone and luteal phase defect. I’ve looked online and some reasons are like thyroid, peri menopause, chronic stress etc. I know I did get super stressed starting last July because it was her due date, we got the post mortem results and I also had my covid vaccine. But I don’t want to blame stress because o certainly think there is more to it. The cyclogest stops it so I tend to test 12 dpo - see the BFN obviously and stop the prog and wait for period.

Thats interesting to know that the lining compacts after ovulation. So would mine of likely been more than 7.2mm pre ovulation? When I looked online it’s hard because it almost makes out on some sites it gets thicker after O but then estrogen pre O is what thickens it isn’t it. So much to consider.

Just had my Day 9 scan and my lining is 4mm. Can't believe it. Wondering if this is the impact of the Covid. I just feel so hopeless. Can't believe this is going to fail again.

Hi @ChickenT2b I'm sorry for your losses. Garden has shared her blog which has info on micro biome. I did my Emma and Alice with my IVF clinic so not sure what Mr S does. It's so hard having to figure all of this out, you are right.

@Loz2467 welcome back. Your lining sounds fine. It's the measurement at ovulation that matters as others said. Sorry I don't have any good advice to share - my head is a bit scrambled just now xxx

Oh @Janefx40 ffs. I'm so sorry. What the hell is going on for us?! What was your follicle size? Are they just monitoring you or have they given you estrogen? This is so shit.

Sending you a hug ❤️

@ChickenT2b I'm sorry for you're losses. I have had the endometrio tests with Dr Shehata's clinic (his colleague Dr Jan) but it wasn't my first line testing. If you did decide to see him, he'd look at your immunes, but I guess you could ask and this could be investigated. It's expensive though, but if you haven't had any investigations yet, waiting for the nhs does take time x

The follicles were 12mm and there were 2 on the right and one on the left. I usually only have 1 on a natural cycle. And this is smaller than usual for Day 9. So I'm trying to hope that maybe this is earlier than we usually scan in terms of development and that maybe the flashing smiley is just because I have 3 follicles rather than because I am close to ovulation. Clutching at straws.

It does sound like you're a bit away from ovulation @Janefx40 so hopefully your lining has time to catch up. Didn't you say that sometimes your lining takes a jump as you get closer? So maybe in 4/5 days you'll be ready to ovulate and your lining will be improved? When do you go back? X

@VenusStarr I hope so but we've had enough Day 9 scans between us to know that it's not a good start!

😑😪 I know @Janefx40 I really hope you can catch a break xxx

@Janefx40 how annoying :( have you got another scan booked in?

We should rename this thread the everything goes wrong thread.

@Loz2467 all the research on outcomes looks at lining preovulation, it's harder to measure once progesterone is released, but if it's 7.2mm after ovulation I'd expect it would have been thicker before.

I am CD1 today obviously my last ditch attempt to avoid scars didn't work. At least I don't have long to wait for the op. I'm now worried about getting in the transfer since day 1 of the FET cycle would be around 18th November and I have no idea if that would be affected by my clinics Xmas shut down.

It certainly feels like things keep going wrong @Gardenlady543 I'm sorry it's cd1 today. Did you say surgery is cd9?

I've decided to stop estrogen and progesterone today so that my period will hopefully be here by Friday. I've booked cd1-5 bloods for then.

After that, I'm going to try and not think about ivf or cycle days and spend a bit of time just on us. The plan is to start Mid-october with low dose stims (bemfola).
I was reading that stress can have an adverse effect on your lining. My mental health is on the floor at the moment, so need to look after myself a bit better.

I hope everyone is OK ❤️

Sorry it’s not better news @Janefx40 😞

A break sounds like a good idea @VenusStarr you’ve had so many ups and downs lately.

@Gardenlady543 wishing you all the best with surgery. One more hurdle out the way I hope 🤞🏻

I got my final test results back and they showed that Diamine Oxidase is on the low side at 11.9 u/ml (normal > 10). They want it above 30 so I’ll be starting supplements next week.

For anyone wondering about this, Diamine Oxidase is responsible for degrading histamine, a raised level of which is associated with excessive inflammation and a higher risk for pregnancy loss. My Vaginal Ecologix test in March reported increased inflammation. My levels were 475pg/ml whereas a healthy range is up to 220pg/ml. I knew nothing about this test two weeks ago so wanted to share in case it helps anyone.

There’s a test you can do at home, which I may do in a month or so: www.cerascreen.co.uk/products/histamine-intolerance-test

My TEG test suggested I have a “normal clot strength” which I’m assuming means I don’t need aspirin or clexane but I’ve asked to be on the safe side. Not sure how I feel about not taking it…

My Anti-nuclear Antibody test was negative so no need for the Hydroxy apparently. Has anyone else had the test?

@MyEasterEggs that's interesting about the histamine levels as raised histamine has been anecdotally reported for some people post Covid.

@Gardenlady543 sorry there was no miracle pregnancy but there is another plan. Surgery goes ahead. How are things with DH now?

@VenusStarr a break sounds good. So important to remember what normal life is like sometimes.

My body is all over the place. My CM is very erm plentiful. Much more than normal. And I'm having cramping as tho I'm about to ovulate. On the plus side, if I have a super early ovulation again at least this won't be dragged out and we can cancel straight away.

@MyEasterEggs I had the ANA test with Dr Shehata and mine was positive. I was put on hydroxy from the start (and no pregnancies). He added pred after 3 months, but obviously been pregnant twice since and not good outcomes. But I do think the pred was what made the difference.
What supplements are you on for the Diamine Oxidase?
Good news about the TEG, although I'd feel the same as you re the clexane. It's part of my ivf protocol (well Dr S likes fragmin, I prefer clexane and have used both).

Interesting @Janefx40 definitely sounds like you're gearing up to ovulate. When's your next scan?

@Janefx40 I’ve had MRIs showing areas of inflammation so I’m inclined to think it’s not related to covid, but I did have it at the beginning of the year so you never know.

@VenusStarr thanks for confirming you had the ANA. I think I can safely park Hydroxy then. But the aspirin and clexane I’m definitely wobbling over…I’ve never had pred and I do feel certain it could help me given my other test results.

I’ll be on a DAO supplement. This was recommended but I’m going to check with nutritionist: www.naturitas.co.uk/p/supplements/digestive-enzymes-and-probiotics/digestive-enzymes/daofood-plus-60-capsules-dr-healthcare?gbraid=0AAAAACdWcMZfMmpTud_BoRaQWOLaXxUok&gclid=EAIaIQobChMI0JWcmcfY-QIVII9oCR18XQZeEAQYBSABEgK9AfD_BwE

@Gardenlady543 thank you! I couldn’t find anything really about the lining post ovulation and like I said some sites seem to act like the progesterone thickens it when really it just changes the stage doesn’t it. I guess I’m not gonna know unless I get a scan. Also I was thinking. We will start IVF in January if not successful because my medicated cycles will be done. Because since last July I’ve had spotting from 5/6/7 DPO etc has this stopped any potential pregnancy? I get full flow at 14 dpo. Before my loss I had an 11/12 day luteal no spotting before Af or after AF. It’s just all changed since the month I had my covid vaccine :(

@Loz2467 it's so hard to know with spotting. It could indicate a drop in progesterone but it can't be that big a drop as you don't have your proper bleed until later. I think hormone levels are so complex. I get a menstrual migraine 3-4 days before my period so I have also wondered if I have a "hidden short luteal phase". But I've never been able to work out which specific hormones are causing it. Plus I got my normal menstrual migraine the month I was pregnant with my DD so that makes no sense.

@Janefx40 that’s such a good point! I actually never thought that it’s likely a slow drop because of me still waiting for AF. It’s so very frustrating. 2 months ago I had my progesterone blood test at 7 dpo and I started spotting that day and it was 21 nmol and I think they like it over 30 ideally today sustain a pregnancy? If I’m right? I don’t know. Maybe I’m clutching at straws but either way I won’t head into IVF until the new year anyway now. I hope your lining thickens up 🤞🏼 I’ll have everything crossed for you.

@VenusStarr sooo in light of my PAI-1 4G/5G mutation status, I do still need aspirin and clexane at doses advised by my clinic! Quite relieved about that.

Hope everyone is doing okay as we start a new week. I’ve booked my final two womb massages with a friend (as we did a little service swap) and I found a local reflexologist (who I hope offers a better experience than the last one)!

The reflexologist does energetic cellular healing too so thought I’d bolt a couple of sessions on as it doesn't cost much more. I think it’s like reiki? I haven’t had reiki for 20 years so I’m curious…

@MyEasterEggs what is a womb massage? I like the sound of that!

Just had my day 11 scan and lining is 7.1mm. Follicle still only 15mm so am feeling much happier. I really don't trust that other sonographer. Not sure if my previous reading was wrong or just a bit early. So unless we have another disaster, it looks as tho this will finally go ahead!