ERA/EMMA/ALICE Testing Thread 3

[Janefx40]

Hello all,

This is a continuation of the ERA/EMMA/ALICE Testing thread.

New posters are welcome. On here you will find a group of women who are either doing these tests or have done them already and are further on the journey

This is the friendliest and most supportive group so feel free to join and post

Xxx

@VenusStarr gosh that's not a good update :( how are you feeling? I'm here walking through the snow storm with you while we have everything thrown at us, so you're not alone ❤️

I don't know about Mr Jan can he do the surgery? Is it worth getting a consultation with Mr Trew or Mr Lower as they are the experts in removing scarring and adhesions.

Fetilysis mentioned C-GSF injections to me, I have only used them in people with poor immune systems to get their neutrophil count up.

@VenusStarr Oww no :-( That's so annoying to have another set back. At least you won't waste your embryo and you know there's an issue. Have you met Jan before? He's my fav. I had my hysteroscopy right at the beginning of my cycle yes. I was only allowed to transfer that month as there was nothing wrong, if I needed any procedure from it he said I'd have to wait a month to heal. Will you try to see him before your new cycle starts so you can book in for the procedure and start the FET drugs encase the hysteroscopy doesn't find anything?
GSCF is a good idea, I was reading about it and in the US they call it a miracle drug. x

@VenusStarr I am so sorry to hear that another thing came up. 😔

Hi all. Name change cream here
Just came on to see how everyone was.
Venus I’m so sorry - I’ve had this twice both times corrected. Mr lower is an expert and will see u promptly. I would go to him.

Garden-I had gcsf injections and all the recent bloods you had done with my son. I sent bloods to USA to braverman due to desperation at the time. Had numerous issues but then with my daughter I didn’t do any immunes so not sure what to think.

Waves and hugs to everyone else x

@VenusStarr on no! What crap news! I hope you manage to get an appt soon with dr Jan. I saw Mr Lower to remove my big adhesion and he did a really good job.

@Gardenlady543 hope your blood test results gives good stable thyroid results!

@a1l320n good to see you. Hope all is well with you and the baby.

Everyone else, big love to all on this endless treadmill!

I'm on cd35 and don't know if I've even ovulated yet (sticks say no but I have missed it before) so I'm feeling annoyed. Dr Shehata wanted me on pre-conception vitamins but they always make my cycles really long, I should have asked if I could just stick with folic acid (plus the specialist ones). I had my ivf dr consultation last Monday and still waiting for a nurse to call to book me in! It's so annoying - it shouldn't take this long. I chased on Friday and was told yesterday that a nurse would get back to me at some point. If they tell me june is booked up already (dr thought June at earliest) I might lose my shit as that will have been well over a year since my last FET.

Thank you @Gardenlady543 ❤️ this is a shitty, relentless storm.

Mr Jan works at CRPA with Dr S, he actually did my endometrio tests last Summer, he is really nice. I've spoken to a couple of ladies who had scar tissue and he removed and they both said they'd recommend him. I think I'd rather only deal with CRP and my ivf clinic, coordinating it all is already making me anxious. Had a horrible anxiety dream last night, my husband and a child(?) were behind glass and were in trouble and I was banging on the glass and shouting but they couldn't hear me 😔

@StillTrying10000 I'm glad you would recommend him too. I've been googling my scan pics and I'm pretty convinced he'll need to remove it, so I think I'm going to wait and heal before we plan a transfer. As hard as that is.

The cost of potentially 2 hysteroscopies and then the FET plus the immune drugs is making me panic too. I just want to hide away and scream, but that won't fix anything. Really feeling the unfairness of it all.

@a1l320n 👋 good to hear from you. I'm glad you got it resolved.

@Yuliaaa thank you

@seven201 it does help to know others have had adhesions removed and you can heal. Feels like there's so many obstacles. I'm really stubborn though, I don't want our ttc journey to fizzle out like this, so we will continue. I think dh is struggling with it all and is unsure were going to get there.
I'm sorry you're having a longer cycle. If you think it's the supplements, I'd be inclined to go back to just folic acid and vitamin D, until you're pregnant 🙏
I hope you hear from the nurse soon too. I hate how everyone medical is so blasé and laid back!

Xx

@VenusStarr if there's someone you have a recommendation for at CRP it definitely does make sense to stay there. Less of a logistical/admin headache that way. Sorry this is going to delay you (that is such a mental blow) and cost so much. It really is totally unfair. I'm like you, I'm stubborn and wouldn't want to give up in such circumstances. I hope your dh processes and picks himself up again.

I think I probably will stop the ttc multivitamins. I'm just glad we're not ttc this month as that would have been sooo much ttc sex - urgh!

@whatcangowrong hi congratulations on your pregnancy. I just wanted to check in and see how is all going?

I saw you wrote that you had an endometrioma removed. I have one currently and I’m wondering which dr removed it for you?

Also did you ever do the emma and Alice tests ? If so did you ever have to take antibiotics for any bacteria and did your partner have to take them too?

Hope all is well ,
Xx

@Dochas12111

Hey congratulations on your pregnancy!! That is very exciting. I am wondering did you ever do the emma and Alice test and come up positive with bad bacteria and have to take antibiotics for it? If so did your partner have to take antibiotics also? Also if so which dr performed the biopsy?

Hope all is well,
Best,
Xx

Hey Everyone

Sorry I’m coming into this quite late. I have tried reading through everything but it’s quite hard to follow what has happened. My heart goes out to all of your losses I hope all will go well soon.

Has anyone had a successful pregnancy after achieving results with the emma and Alice tests? Anyone who did have to take antibiotics for a certain positive result?

I am thinking of of having the treatment.

Thank you all in advance!

Hi All,

I hope you don’t mind me joining the thread. I’ve tried to have a read back to update the best I can.

I’m TTC after a MMC at 17 weeks last Feb. The reason was an infection however the hospital never gave me any antibotics and I also had the placenta removed by hand after giving birth. These two things really indicate to endometritis. I tried for a long time to get to the bottom of what was “wrong” and I wasn’t being successful conceiving again. I tried so so much then finally went private in January of this year to try and get answers. The Dr said my ultrasound of my lining had an abnormal appearance and a potential polyp or “area” from where they manually removed the placenta. I don’t think I’ve had the best care and I feel quite angry about that but we have to push forward.

Anyway I’m thinking I have chronic endometritis as i have no symptoms. Latest was I had a call a few days ago off my doctor saying he is going to do the hysterscopy and a D & C to scrape the lining and for it to rejuvenate again. I’m nervous that it won’t work but well aware I need to try and have some hope. I could also have scar tissue from this. I will know more hopefully at the end of May.

Has anyone else had similar? TIA x

Can anyone advise how painful the biopsy for Alice & Emma is? I had a hycosy and they had to stop halfway it was so painful.

Hi @a1l320n nice to hear from you I hope you're doing ok ❤️

I'm sorry about the nasty dream @VenusStarr I bet it shook you up for the day. It sounds like you're with a good team and you will be able to get a plan sorted soon.

@seven201 if you're thinking up I might do a retrieval in the future, not sure if you will I know you mentioned it in the past, but if you might then you may want to keep on the supplements as you need to take them for 3 months before a collection cycle for a benefit.

Hello to the new people:

@Rainb23 I'm not surprised it's hard to keep up, especially as so many of our situations on here changed rapidly! A few of us needed antibiotics and probiotics but most of us also pursued other things at the same time, so it's difficult to know how much benefit is gained. However I doubt a abnormal microbiome would help so it's worth pursuing. I'm a work in progress in case you hadn't guessed.

Hi @Loz2467 is your surgeon a specialist in this? @a1l320n and @seven201 have been through surgery with Mr Lower and I went through surgery with Mr Trew, both are experts in removing adhesions and scaring, if someone doesn't know what they're doing they can make the situation worse. Investigation for chronic endometritis definitely sounds like it would be useful in your case, you could either have a biopsy for the EMMA ALICE (but make sure you also get tested for ureaplasma as this test doesn't do it), I also had a microbiome test of menstrual blood from a company called fertilysis.

@Conundrum12345 I have had 4 x endometrial biopsies, they will put in a speculum and then take a sample, once they start taking the sample there will be a few seconds where you will feel a period cramp type pain, it is over quickly, this is the tissue that you will shed in your period so it really wasn't that bad.

I had my thyroid blood taken yesterday so I'm waiting on the result, I've now been on the meds for 4 weeks and noticed they gave me a different brand for the next 2 weeks (I'd picked up the 6 weeks all at once) I panicked as I can see that there is evidence showing tsh can become abnormal when you switch to another brand, luckily the pharmacy were happy to switch. I had another scan today to see what's going on with the fibroids. The one that is always there at the top is there and she said she can't tell if it's pushing into my uterus or not and that I'd need a 3D scan to tell. There is also a new one, it's on the side about half way up and is pushing into the uterus but she thinks it may be fine as that's not an implantation area. Not sure what's happening, think I may need to get another scan and then figure out if I need to do anything.

@Gardenlady543 thanks so much for your help and the info. You seem to know a lot about this although it was never anything any of even knew about previous to loss and infertility I guess!

He hasn’t said anything about definite scar tissue or endometritis. This is just me “self diagnosing” after the infection and miscarriage and placenta removal and then my “irregular” endometrium showing on the scan, no triple layer. So basically my letter says “hysterscopy wirh potential polyp removal and D & C to prove therapeutic to the endometrium and hopefully give a rise to pregnancy” he basically said on the phone to remove it then it can regrow and regenerate.

@Loz2467 everything that you've said would point to scarring, often there is no indication at all on an ultrasound which can look completely normal. You likely have Ashermans syndrome, d&c is a cause of it hence why your surgery could make the situation worse, is your surgeon going to use microscissors? The ultimate investigation is a hysteroscopy, but this is also how it's treated. There's two groups on Facebook for people with Ashermans- a uk one and an international one, it might be worth you asking there to see what they recommend.

Hi everyone

Sorry for radio silence.

@VenusStarr nooooo!! I can't believe you have this extra hurdle. I can see why you feel overwhelmed. Sounds like you have a couple of good options for surgery. When can you have it?

Welcome to @Loz2467 @Conundrum12345 @Rainb23

@Conundrum12345 I was in a total panic about the biopsy and I barely felt it! I had found the 3D scan painful but this was fine. When is it?

@Gardenlady543 let us know what the latest bloods show.

Am about to take my second Humira. Sometimes I feel like I'll still be doing all this when I start drawing my pension!

@Janefx40

Its on Monday! I'm dreading it after the hycosy but hopefully it's not as bad!

@Gardenlady543 that’s what I thought but scarring from the infection because I never had a D n C I had a induction and natural with our miscarriage then hand removal of the placenta which I’ve read isn’t a great move if there is an infection present. If I do have scar tissue and not just inflammation I’m not sure if I’ll have to go for another procedure. I’m just trying to trust what he says although I worry constantly and always think the worst. As I know infections can cause scar tissue too not just D and C procedures.

Loz2467

Hello there. First, I am so sorry to hear you lost your baby at 17 weeks. How awful.

I have a not terribly dissimilar story. I had an IVF pregnancy to 18 weeks when they diagnosed a very severe, congenital problem that was not compatible with life.

I had to have an induction, so really quite similar to a miscarriage. I had retained products and a D and C the day post delivery for retained products. However on ultrasound about 6 weeks later they still saw retained products, similar to what you were told. Had another hysteroscopy then to remove the retained products. So the ultrasound irregularity detected was indeed something that needed removing. Sadly no implantations since despite 3 transfers. But I am even more complicated. I now seem to have an immune issue, very high cytokines and also have been diagnosed with silent endometriosis. My ALICE/EMMA and ERA were all essentially normal, apart from low lactobacilli. Before I got the recent diagnosis of endometriosis the immune specialist was very clear that retained products are enough to cause an immune reaction and block implantation.

If i were you i'd definitely get the hysterocopy, but make sure with someone good. In your case it could be just a case of needing the retained products removed. Also get the ALICE EMMA ERA, if you can.

For me, unfortunately that wasn't the answer, but I hope treating the high cytokines will help.

Hope this makes some sense

Ps was your pregancy ivf or natural?
My only option is IVF

Take care.

@Littledream I’m so sorry to hear about your pregnancy loss too. 💔 followed by continuous problems since. It makes the journey of grief so much harder doesn’t it.

All that is so interesting… I hope the treatment helps you soon for a future transfer and implantation 🤞🏼

It was a natural pregnancy. I already have a 2.5 year old. I got pregnant with my second when we started trying. Obviously lost her at 17 weeks and then failed to conceive since . I’m nearly 36 so I thought I’d give it a year and see. It got to January and I couldn’t take anymore.

The letter from the clinic basically says…

“Irregular pattern of the endometrium and a potential polyp. So removal of polyp and D&C to scrape the lining to revive gas a new one to grow”. Basically in simple terms.

I’m scared incase it’s retained products of conception as my miscarriage was 1st Feb 2021 so that’s 14 months wirh retained products? My cycles have been accurate since. Ovulating on normal day and period starting 14 days later however spotting on the was up to my period which he’s obviously described as abnormal bleeding. Sorry for TMI but it’s a brown spotting. The NHS have done various scans and tests and hormones etc but nothing picked up until I went private and they did a more detailed scan.

Is it right that I can still have retained products of conception so long later? Xx

“Ans

@Littledream sorry rejuvenate a new one to grow

@Loz2467

Its so hard to known isn't it. But I think of it were me I would do a diagnostic hysteroscopy if you can get one done. You don't have to get any lining removed, but at least they can look inside the cavity for you and make sure normal. I've had 2 now. And I did worry that it could damage me. However I don't think it is the same risk when not pregnant, I.e for ERPC procedure, when they must remove the pregnancy. A diagnostic hysteroscopy can be just that hysteroscopy, a look in by camera( won't scar) But of course if they see something there that should not be they should remove it for you.

Hopefully it will be normal.

Sometimes what I do when worried about a decision is book to see the consultant to arrange it, knowing that I can cancel it nearer the time. Often there may be a wait etc.

In the meantime maybe you might get pregnant naturally.
..

Finally, and no need to answer,but do u know why you lost your baby at 17 weeks. If there was no abnormality with the baby, maybe it might be worth talking to Dr Hassan Shenata, he could advise you on your whole picture, and also on the hysteroscopy need. I listened to his podcast, listed above, and he sometimes recommends immune checks after even one miscarriage if it is very late like yours was.

I really wish you good luck. X

@Littledream thank you so much for all the info. He’s already booked me in for an operative hysterscopy next month to remove the polyp or what he thinks is one. I have to change the date though as I’ve ended up ovulating earlier than usual 🙈 which is a little frustrating. I won’t get pregnant naturally with my lining like it is. It’s damaged in some way… even my periods have been different since etc so definitely something not right.

How will I know if I have an immune issues after this? Is there anything I can have tested or not? I just don’t want to get ahead of myself however I’m worrying that once my lining is potentially sorted I might have further problems conceiving?

Yeah the placenta results showed chorioamtetis suggestive of covid. Which I knew deep down. I got covid at 12.5 weeks pregnant. She stopped growing at 14 weeks but I didn’t know until we got to a gender scan at 17 weeks as it was a MMC.

I’m just worrying about further immune issues now. :(

I’m wishing you the best in your upcoming treatment with your medication xx

Thank youu @Janefx40 and @Gardenlady543 !! Does anyone know if anyone on here has achieved a successful pregnancy after taking antibiotics and probiotics from the emma and alice tests regardless of other factors that maybe have been involved?

Hope all well with everyone,
Best,
X

Evening ladies,

Not doing ok. I went for my breast scan today. I have to do an MRI because each breast has an unknown growth which isn't a cyst. Doctor doesn't think is cancerous, but she wants to make sure that everything is ok. My breasts have always had a strange structure and they are also full of cysts. I have a BIRADS 3 score, which is ok, but I am very scared at the moment. I'll be having the MRI in two weeks' time and I need to keep it together. 🥺
Hope you guys are OK.
Hugs!!