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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

ERA/EMMA/ALICE Testing thread 4

987 replies

Janefx40 · 02/05/2022 21:22

New thread ladies! @Gardenlady543 @MyEasterEggs @seven201 @VenusStarr @Violette22 @Yuliaaa

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Gardenlady543 · 05/05/2022 15:21

@Violette22 obviously you know your own body and what's happened in the past but brown blood means old blood and isn't necessarily worrying.

Thanks for the advice @Janefx40 I'm using my friend as my Guinea pig! I will likely get the same treatment as her but with more things probably. I'm quite surprised he has recommended so much for her as her results looked fairly normal to me except nk cells were slightly raised and he said he likes them under 10%.

MyEasterEggs · 05/05/2022 21:00

Does anyone know what the live birth rate of Dr Shehata is? I’ve read that it’s somewhere in the region of 80-85%, which seems really high to me. Also, what lab does he use for his blood tests? Or does he have a lab within his clinic?

@Violette22 I agree this sounds like old blood. Are you on progesterone? And when are you next having bloods drawn? Hopefully, you can get some reassurance. It’s such a rollercoaster of emotions. Sending lots of love and strength 💛 xx

VenusStarr · 06/05/2022 07:04

@MyEasterEggs yes, it's 80-85% he sends the bloods off to St Heliers. My initial tests came back within 2 weeks.

Good luck today @Janefx40

@Violette22 I'm sorry you've had a scare. I hope it's nothing serious. These early days are awful. Today you are pregnant. Try and take it an hour or even a minute at a time ❤️

MyEasterEggs · 06/05/2022 08:30

Thanks for confirming @VenusStarr and where did you see these figures? I’m leaning towards seeing him for immune testing and treatment as my clinic haven’t been able to answer all my questions about their approach. Not an issue as such as I’m happy with everything else they focus on but I instinctively feel I need that support from someone who’s an immune and recurrent miscarriage specialist xx

VenusStarr · 06/05/2022 08:57

I'm sure I read it on the CRP website, but in one of the Facebook groups I'm on, I think someone shared something in there. It's called UK storms and rainbows. Its a closed group for women who've had multiple losses. When we first had our appointment he also told us his success rates.

I think listening to a couple of podcasts recently, seeing an actual reproductive immunologist for tests and treatment is the best approach. My ivf clinic do use steroids etc but they've told me they're unsure how to help us maintain a pregnancy. You've got to feel confident in the approach. I know not everyone is keen on Dr S and the clinic, but I like them.

VenusStarr · 06/05/2022 08:57

@MyEasterEggs forgot to tag you!

Babydustt12 · 06/05/2022 14:17

Does anyone know if there is a difference between the endomeTRIO and ER MAP?
ive just started using Mumsnet and I don’t know how to use it yet. Hopefully I’ve put this in the right place.

MyEasterEggs · 06/05/2022 15:29

I haven’t heard of ER Map @Babydustt12 but there are a few women on this thread who have researched a lot of the tests so I’m sure one of them will be along to help. I’m doing the EndomeTRIO soon. Welcome!

@VenusStarr thanks so much. I was really encouraged by his appearance on The Fertility Method podcast. An embryologist and nurse from my clinic were guests and it was reassuring to listen to them too. I liked the embryologist in particular as she is no nonsense!

Janefx40 · 06/05/2022 22:55

Hi all. Had my meeting with Mr S today. Heading for transfer when next period starts. Was made more stressful as it was meant to be Zoom but they didn't send me a link and I have no phone reception here! Luckily I turned on wifi calling (didn't know that was a thing!) and Mr S was able to call me. It was there error but made things feel very stressful.

He's not worried about thin lining as I had a couple of chemicals recently so body maybe just a bit out of whack.

Xxx

OP posts:
seven201 · 07/05/2022 09:40

@Babydustt12 sorry, I've not heard of endo map.

@Janefx40 that is wonderful! I'm glad it's going to happen soon. Sorry about the IT issues!

VenusStarr · 07/05/2022 09:56

That's great news @Janefx40 (not the admin stress though!) when is your next period due?
How are you feeling about going into a FET? Are you doing medicated or natural? X

Babydustt12 · 07/05/2022 10:52

Oh good luck with your endomeTRIO. Have you have the biopsy yet?

Babydustt12 · 07/05/2022 10:55

Not sure if anyone had tried probiotics for immune issues and raised NK cells. I will was told to have raised NK cells and tried probiotics as your gut is responsible for 70% of it. I’m convinced it has work

Violette22 · 07/05/2022 11:33

@Janefx40 oh that kind of technical issues must have been so nerve cracking. Im glad you got in touch with Dr S in the end, your upcoming FET sounds exciting! Did you already mention what your protocol will be?

@MyEasterEggs Also in both of the podcasts I listened Dr S told that his success rate is 80 %. He also said that it is better for those whose losses have happened between weeks 6-9 rather than earlier or later. This worried me a bit although I have had one that made it to 7-8weeks with a heartbeat, others were earlier.

@Babydustt12 I don't know what the link is but my EMMA test showed I have 0% latobacillus, I havent been tested for immunes but I also think there is some connection...

@Gardenlady543 How are you? When will you get your mans Fertilysis results?

Thank you for your kind words about the bleeding @Gardenlady543 @VenusStarr @MyEasterEggs

A lot has happened here again. Yesterday morning I contacted the clinic about the bleed cause my doctor had mentioned that in case of a bleed I might need to stop the blood thinners and possibly start a medicine that stops bleeding, it is called cyklokapron here. I had already booked my first scan for next week for a new doctor and I wanted to get the guidelines from him cause he is the most experienced one in the clinic. The nurse said they will get me the guidelines asap but I didnt get any reply from the clinic when it was already 3pm when their telephone lines are closed. Cause I knew that their doors are usually physically open until 4 I felt like I had no other choice than drive to the clinic and get the answer there, my life is a bit crazy isnt it? 😅So when I was 500m from the clinic I finally got a message from the nurse that she still hasnt got a reply from the doctor. The nurse adviced me to inject the heparin anyway (i had delayed it from my usual injection time which is 7-8am). Do you think this kind of a delay is bad @Gardenlady543 ?

So then I went to the movies with my friend (new Downton Abbey film :)) and when the film started the doctor finally called. He had been in a conference all day and was now calling during a coffee break. He told me that the best way to get some info on the situation and make the decisions on the blood thinning/thicking meds is an ultrasound. He asked if I could come for a scan tomorrow (=today = SATURDAY)..they are always closed on Sat but he had to go to the clinic for something else too so he wanted to offer me this. This was so nice of him! He is endeed a great doctor who really wants to help his patients. He even texted me in the evening that day to ask which pharmacy I would like to get the blood thickening prescription <3

So today we went to the scan and according to the doc everything seemed good. I am now around 4+6 weeks and we could see the gestational sac and the yolk sac. There was no sign of a hematoma which I have had at least in one previous miscarriage. So the reason for the bleed was not found. Thankfully I havent bled (knocking on wood) after Thursday. So I will continue the blood thinners and the thickeners would be started only if I bled bright red blood (not brown).

I also talked to him about me exploring the immune testing abroad. Unfortunately he didnt seem to trust the tests so much...😕 So if this pregnancy fails Im not sure we could do the Dr S protocol here in Finland. He is a keen believer on progesterone preventing miscarriages and told me that progesterone is also a kind of an immune-drug, have you heard of this before?

Sorry for the super long message, I hope everyone is OK 💜

Violette22 · 07/05/2022 11:37

@MyEasterEggs sorry I forgot to answer your questions. Yes I am on cyclogest x 2, Terolut (oral) x 4 and a daily progesterone injection. I guess I wont have any more hcg (unless I get more bleeds etc) since we did the scan today, next scan booked for Friday...

VenusStarr · 07/05/2022 11:44

Sorry you had all that stress @Violette22 but really good news everything is measuring on track ❤️ that's a really good sign.
I know having had losses previously, it's so hard to not think about the worst but try to allow yourself to celebrate the good news, if you can.

I think I'm an anomaly, but in my endometrio tests everything was normal, so although I do have immune factors, I didn't need probiotics or antibiotics and I'm included not to mess with anything. I don't recall progesterone being mentiines as having benefits to immunes but it is part of my standard protocol. But prior to my diagnosis, my 4th pregnancy was on progesterone and that baby was bang on for my dates (my others were always behind), so I think it did help him grow but Dr S said my nk cells are the cause of my losses and subfertility. So maybe for some it has that impact, but I'd guess its not a severe immune issue (mine are exceptionally active in pregnancy).

Hope everyone is OK xx

Gardenlady543 · 07/05/2022 12:00

That's great news @Violette22 you know I
think a lot of us here are so used to literally every single thing going wrong that we don't expect anything to go right. That's how I felt when I had the scan last week with the ovarian pain that I just assumed it would show some new complicated issue and I was surprised to only have the issues I had.

I'm not sure how late you were in taking the heparin but I don't think it's too important with the stage you're at. I forgot to take it the night of my last FET and that was a bad thing as it helps with the events needed for implantation to occur. There really isn't much evidence for blood thinners even in conditions like APS so I don't think it matters much if it's late. To be honest there is very little evidence for most of the things we're looking at though, but then we are not the traditional cohort of medical studies. As far as I'm aware there isn't a study with a cohort of people like me, never been pregnant, 4 unsuccessful transfers. It sounds like your local doctor is in the non-immune camp, in one of my books it says this is such a contentious area of fertility medicine that they even have separate conferences.

I am not sure when I will get the sperm results, this Wednesday they would have had the samples for 1 week and they normally say 2 weeks.

Good news for me this week, I don't think I mentioned it but my 8 weeks on levothyroxine test shows me to still be in range and every test has been consistent. So I'm on the right dosage, worrying about my hair still, the whole time I've been doing IVF literally the only thing that's been going well is my hair has been in such good condition (2.5 years of prenatal vitamins). I don't know if I worrying unnecessarily as there is nothing obviously wrong with it to others.

Sounds like you are well on your way @Janefx40 how are you feeling?

@Babydustt12 I've not heard of ER map although can see one clinic uses the term alongside ERA. Not sure if it's the same thing or a different company doing a similar thing, looking at genes that are turned on and using their data to decide where the receptivity window is. I know there is a completely different test, I think it's done in USA where people get a decidualization score from the results of various markers.

Yuliaaa · 07/05/2022 16:46

@Violette22 I am so sorry you had to go through all that nightmare, but I am happy to hear the updates. I am sending you lots of hugs! 💜

MyEasterEggs · 07/05/2022 17:50

@Violette22 that’s good news. You must be so relieved. And it’s lovely you’ve had such great care.

Interesting you mention that treatment is better for those with losses between 6-9 weeks. I haven’t heard or read that and only two of my six losses were around that gestation. Two were earlier and two were later. I suppose it’s something I can query.

seven201 · 07/05/2022 19:00

@Violette22 that is a great update.

My 3 miscarriages (maybe technically chemicals) have been around 5 1/2 weeks, so I'm ignoring that statistic!

@Babydustt12 my edomtrio (was ages ago) showed I had lactobacillus and am on oral and vaginal probiotics. This year I had immune testing (Mr S) and have three immune issues, one of which is high activity of NK cells. I'd not heard of them being linked, but I'm not as well researched as the other ladies on here. I always have cyclogest and lentogest (progesterone in oil injections) - I've not heard about progesterone helping with immune stuff.

Babydustt12 · 07/05/2022 19:38

@Violette22 i have to be honest I don’t know the science behind it. But I’m working with someone who claims to know the science behind it and put me on few probiotics which seem to be working 🤞

Babydustt12 · 09/05/2022 07:19

@seven201 I don’t think there is a link between progesterone helping immune issues. What treatment are you on for the immune issues?

Babydustt12 · 09/05/2022 07:24

@Gardenlady543
thats the test prob is! Well done on your thyroid results. Hopefully it will continue this way.

Violette22 · 09/05/2022 09:46

Hi all❤

I also didnt think that progesterone effects immunes before my doctor mentioned it and found same info on Dr Alan Beers (is your body baby friendly writer-the father of immune testing) website:

www.repro-med.net/progesterone-levels-during-pregnancy

Many thanks for the consultation of the heparin @Gardenlady543 . Happy to hear the good news about your thyroid. I hope you will get your mans fertilysis results next week. What will be your next steps after that?

Thanks and hugs back to you aswell @Yuliaaa , how are you doing by the way? 💜

Thank you @MyEasterEggs and @seven201 Yes Im also curious to hear more about the success rate being better for losses between 6-9. What is the reason behind it? Could it mean that if your losses happen then, then they are more likely to be immune related?

I know I propably should be relieved after the scan on Saturday since doctor said things looked good but Ive been worried about the gestational sac's size. My doctor has written that it was 5.4mm and I can find conflicting info on what it should be on my dates (around 4+6/4+5) online, some sources say it should be 10mm by 5+0...After all the losses I am just so afraid that the embryo is too small...

VenusStarr · 09/05/2022 13:01

Thinking of you today @StillTrying10000 ❤️ I hope all goes well xx

@Violette22 it's so so hard not to over analyse everything. Try and focus on what your doctor told you - that everything looked good for your gestation. They're so tiny at this stage. I think that under 5 weeks, seeing the foetal pole would be really hard even for an experienced sonographer. When are you due to see your doctor again?

How is everyone? Just waiting for af, hopefully will be here by Friday and I can start my superovulation meds 🤞 xx