ERA EMMA ALICE testing thread 8

[Gardenlady543]

@2021ivfagain @kerrym87 @Janefx40 @seven201 @thislittlebird @Spin101 @Enfys23
@CailinInUK @BewilderedBee @Loz2467 @Lori2022 @VenusStarr @clhiu @Faithhopelove83 @APSR @ChickenT2b @Mina209 @IVF22 @Lizzybeth1988 @AM08 @Fluffykins33 @Sar1010

Continued in from thread 7 :)

@Mybabydream no they didn’t think my first embryo was thawing well (it eventually got to 50% and stopped expanding after that) so they thawed a second embryo and transferred that one. Unfortunately no successes. I’ve only had the one transfer and my lining was 4mm which is likely to be the reason for failed implantation

@Spin101 sorry to hear. Mine was 55% but they insisted there is a chance as it was atill showing some expansion and it had been tested prior to freezing . Fingers crossed

@Mybabydream i think the fact it has been tested and was still expanding is great. I have my fingers crossed for you!!

@kerrym87 the only thing to consider is that it can be a bit unorganised there. Are you in the UK reproductive Immunology FB group, you can see people mention it in the Reproduction Immunology Support group?

@Spin101 I started with fetilysis immune tests to see if I had an immune issue after 4 transfers.

@Gardenlady543 Dr chewla actually suggested not going for too much immunology forst off as we've only had 2 embryos transferred, but did suggest saline scan, ema/alice, karyotype, sperm anaylsis and enhanced testing. We need to get over hurdle of not producing usable embryos. In what way are they disorganised? X

Hi all. So grateful to @gardenlady543 who tags me on top of the board each time. I’ve hovered over the boards a while but haven’t posted much at all. And huge congrats to @Gardenlady543 too - so happy for you and I hope things continue to go well.

I just wanted to see what peoples thoughts were on my situation. I’m at a complete loss what to do next and I know you are a well informed bunch and sadly have a lot of experience in the area. I’ve had a scan today where I am 7+6. The fetus is measuring small at 3.4mm, there’s no heartbeat and the gestational sac has a distorted shape. I’ve been told it’s not good and been referred to EPU. They want to rescan me in 2 weeks - which I will challenge as it can’t go on that long and I feel today was conclusive enough. This pregnancy is the furthest I’ve got in 2 years. My first pregnancy we had a faint hearbeat at 7 weeks with baby measuring small. It was a missed miscarriage.

All my pregnancies are IVF. And I’ve had a total of 4 losses now. After my second loss I decided to get testing done with dr gorgy. It came back with raised nk cells in blood and uterus and a complete dq alpha match. We did LIT 5 times. I did 3 transfers under his protocol - 1 double transfer failed, I had a chemical on a single embryo transfer and then a pregnancy of unknown location on the last transfer of one embryo. I’ve also tested and treated hidden infections.

I’ve always got further when I’ve not been on his protocol. I had an appointment with professor quenby at Tommy’s who advised an appt with professor brosens. His biopsy came back normal for nk cells. As I couldn’t face the immune protocol alongside a fresh cycle, I was only on progesterone and clexane this time. In the middle of this cycle I got professor brosens’ results and decided to give it a chance of not taking meds for the immune side. I don’t know what the problem is. Why am I getting further when I’m not on dr gorgys protocol? But why am I also miscarrying? I’ve transferred 9 embryos now over 7 transfers.

Hi @BewilderedBee firstly I'm so sorry, the scan result doesn't sound good :( The results you got sound a lot like my situation. I also have normal biopsies, raised nk cells in the blood and a complete hla dqa1 match. I also did 5 x lit and the immune profile with Dr Gorgy. Are you using tested embryos? Have they tested the products of conception? Are tested embryos an option? Is there anything that points to what the issue is aside from immune issues? Eg endometriosis, lining issues?

@kerrym87 if you could join these groups you could have a look at posts, essentially people report a lot of waiting around there, communication issues and a lot of chasing.

I had a terrible day yesterday. My workplace took the only form of support I have away, it's been driven by a senior person that wants to cause me distress. I spent the whole day trying to resolve it and crying. The company won't budge. I'm so worried about the impact the whole day crying had on me and don't know where to go now. I already involved HR and my union.

@BewilderedBee I am so sorry to hear about your situation and your latest scan. I’ve also been in your situation with scans showing no heartbeat and MMC twice so I know how devastated you must be. I really don’t think they should have you waiting two more weeks for another scan I think that’s just prolonging the agony when the current scan appeared conclusive enough and you probably want to move forward with this as soon as possible. I am so so sorry. Can you get a secon opinion/scan elsewhere? Your EPU may be able to see you and rescan you quicker than that. I really hope you don’t have to wait two more weeks. As @Gardenlady543 was suggesting, were any of the embryos you lost tested for chromosomes abnormalities? If not and everything else was addressed, it’s possible they may have been aneuploidy which means in future attempts PGT-A would be the eay to go.

Thanks for all your advice on running and fertility, I think I will continue a couple of times a week without over—doing it as I put almost 5kg on since IVF and it’s really knocking my already shattered body confidence, plus pushes my BMI out of the optimal range for fertility and egg quality. So given that it helps my mood and hopefully shift some of this excess weight, I will continue for now.

I’m sorry about your unfair stressful work situation @Gardenlady543 , especially at a time when we are told to try keeping stress levels down, that’s the last thing you need. I hope HR are supportive and can get you the support you need back in place.

@Gardenlady543 I’m really sorry you’re going through this and it must be terrible. I just want to help you and send a reassuring message your way. When I was pregnant with my son, I had a lot of stress with my mum in hospital for most of my pregnancy and then my Dad’s severe stroke. I cried for most of my pregnancy and it released my stress without getting angry. I’m not saying to keep crying, but it did me no harm. My son is really healthy. I just want you to know that crying will not affect your pregnancy.

Perhaps you could do some nice things to counter this like short walks when it is not so warm and/or acupuncture.

@clhiu I’m sorry you’re worried about BMI. I found what helped me with losing weight, but not fast, is following It Starts with the egg plan. Rebecca Fett says to have 3 meals a day and ensure that one of those is carb free, but don’t go mad. For example, I eat porridge for breakfast with flaxseeds and raspberries, then if I am having salmon in the evening just with pesto and vegetables (lots), I avoid carbs in evening and have a small amount of bread with my lunch. It seems to work. I avoid snacking and I try to space out meals 4-6 hours apart. What I would say is a consultant at CRGH said losing a lot of weight before pregnancy can affect fertility. When I got pregnant with my son, I followed the Rebecca Fett plan but I was not excessively and after transfer I ate what I enjoyed. I did, however, struggle with food in first trimester due to feeling sick most of the time.

Thanks for both your responses @Gardenlady543 and @clhiu

We have been unexplained for a very long time however in December I had surgery for a suspected ectopic. They couldnt do it keyhole due to scarring and had to open me up. It turns out I have bad scarring following an operation to remove my appendix. And I was told after that that I'd never conceived naturally due to the adhesions around my fallopian tubes and ovaries. I also have problems with thin lining too which isn't ideal for my transfers. We achieved 7.2mm this time though. Otherwise everything else is normal and we make good quality embryos.

Our clinic is nhs and don't have the facility to offer PGT-A testing so all our embryos are untested. We have had kareotyping bloods done and waiting on results. In December there was no pregnancy tissue to test but I'm hoping this time this can be done. That will be the next step I guess. Maybe I need to wait on that to inform what happens next and what protocol I should do.

I just feel with dr Gorgy I have spent so much money and not got any evidence it's working for me. Yet I'm so desperate I will try anything. I felt reassured by the biopsy done with professor brosens that it was the right to come off the immune meds. And yet still the pregnancy hasn't kept going.

I'm so sorry to hear about your work stress @Gardenlady543 - terribly unsupportive. I hope the union can help you with it.

@BewilderedBee I’m sorry you’re going through this. It must be terrible. I agree with @clhiu about trying to arrange a quicker scan. Have they been monitoring your progesterone levels? Do you have any lining issues? You said about hidden infections. Perhaps you could work with a nutritionist to help with probiotics and get a more thorough protocol for immune testing? I found things helped when I found a gynaecologist who specialised in vaginal infections. You need to see a specialist who will work with you and come up with a good plan to help you.

@BewilderedBee I was with nhs initially but found they could not help me and I was 37 at the time. Are you able to do Access Fertility? It is good value and you might be able to find a clinic that works with you.

@BewilderedBee A friend of mine took Serrapeptase for scarring, but you would need to get medical advice on this and especially not at present.

@BewilderedBee you have definitely tried the immune route, so I can see why you feel the way you do. And I know where you're coming from it costs a fortune. I guess your situation is more difficult as there are issues to work on if it is implantation failure at play, for example I seemed to benefit from a natural modified FET. But you have implanted successfully, unless they suggest that the implantation didn't happen as it should but then I'd expect that to cause a early chemical loss rather than your situation. I take it you can't pay extra to Pgt a test your embryos? What about going private and doing another collection and testing the embryos? I think push for the products of conception to be tested, this will give you more information to work with.

Thanks for the support with the work issue guys, I've been in a completely state, not had much sleep and been crying for about 24 hours now. :(

@Gardenlady543 sorry to hear you’re having a rough time with work. Are you able to say what kind of support it is that they have removed? Are they aware of your situation? If so, that sounds awful.

I’ve not had a good few days either :(. I’m going to sound like a massive victim now but I feel like I’ve had just the worst 6 weeks of my life with the chemical and all the bad news from extra testing, dad pulling out of paying for ivf and the blocked tube and need for surgery. This is the time when I need my husband the most. I’ve felt like he hasn’t wanted to talk about the immune issues and treatment and finances. Instead focusing on let’s get your mri and surgery done. But this makes me feel very alone. I need to talk about it.
Next thing I know, he walks in from going for lunch with his friend and tells me he wants to go to Barcelona for a couple of days with a friend. To be honest I was peed off. He’s already planning a separate holiday with friends on which I am invited but it’s not my thing. It’s partying in ibiza 🤦🏻‍♀️I did that about 10 years ago.
I just feel like I am not being prioritised at all. I then found out not only did he ‘want’ to go to Barcelona, he’s gone and booked it, same evening as seeing I wasn’t best pleased. I’ve spent the last few days in bed. Just feel completely disrespected and just, given everything that’s going on, 🤷🏻‍♀️ would think he’d like to focus on being here for me or planning a getaway for us instead. Just feels like an extra slap in the face to top it off.

sorry for such a long rant.

I should add. I found out through his friends GF that it is booked. He didn’t even tell me himself. 😔

Oh @ChickenT2b I am not surprised you feel like this, you have so much going on and you need support not your partner going off on holiday. It sounds like they are escaping away from it for some respite but leaving you at home :(

I will just copy what I wrote about the issues somewhere else, a manager at my job has decided to change my line manager. When they did this last year they saw how upset I was (I was crying over the video chat) and I was reallocated back to the old manager. They then sent me for a consultation where a report was written that said I’m protected by disability legislation and as a means of support they should keep me with the same manager and if they have to reallocate there was specific advice to follow on discussing alternative options, to support me with the transition and to brief them about my situation. They chose to completely ignore this and allocated me a manger who I don’t know and the conversations I have had with them have been very stressful. I involved my line manager and another senior line manager that knows me, they both tried to reason with the person that made the decision but he won't budge. So I involved HR and my union, my union support me, but HR won't help they say it's not their decision, it's a business decision. But that doesn't justify ignoring a reasonable adjustment, as they cannot defend that they have ignored the advice to follow if changing my manger. I have suggested an alternative option as a compromise. I already told this person about the surrogacy, the pregnancy loss in my surrogate, the chemical and they know I'm pregnant. I've spent the last 24 hours crying and desperately trying to get a solution in place so this unnecessary distress can be resolved. My line manager has supported me though 4 years of infertility, I don't know how I will cope without them, my line manager said not to worry to have minimal contact with the person they allocated and I can call them any time for support. But I just feel so lost, the person that made this decision is doing this on purpose, they have just ignored the reasonable adjustments and the law is on my side but all I've achieved in trying to resolve this is making my self look pathetic and likely damaged by career prospects. My union told me to go off sick, but I know it will be worse and I will ruminate on it, so I'm trying so hard to get any compromise in place to bring closure to this.

@Gardenlady543 how awful, even if legally you are covered it can be difficult to have to fight for it when they should be proving they do support you. HR should be involved as it is a HR issue, your union should be able to fight your corner. I'm so sorry its putting so much stress on you, sending hugs.
Thanks for replying on issue with clinic..sounds exactly like nhs to be honest! Although they said no waiting for tests etc and just book ema/Alice at start of that cycles period so that's something.

So the update is that I spent another day trying to resolve the issue and spoke to two people and had to tell them my entire history so they could understand the situation. They had been adamant I couldn't keep my manager so I had tried to compromise with an alternative I'm comfortable with. Surprisingly they actually came back and said they considered it and I can stay with my original manager, but it's temporary until maternity leave, which means nothing can now go wrong in this pregnancy because I'm on a time limit with support. The only issue is I'm worried the person who made this decision to take them away will reverse it when they are back next week. For now it's fixed but after 2 days of crying for no reason, so I'm just very tired now.

How is everyone doing?

@Gardenlady543 I’m sorry. I can understand why you feel so stressed and it’s not silly at all. Could you take some time off as holiday instead to make a long weekend? Sometimes space and time from a situation can make things better.

@ChickenT2b That’s terrible. I’d be really annoyed if my husband did that. You need support at this time. Can you stay with family whilst he is away?

Sorry everyone I find it really difficult keeping up with the chat if I don’t check it daily!

Glad you’ve got a plan in place @Enfys23

@Gardenlady543 im sorry you have all that extra stress at work and I’m hoping it resolves for you in the best way possible!

Ive had a busy 2 days. Yesterday I had my review appointment from my failed FET 5 weeks ago! Didn’t learn too much! Option to test the embryos, do the ERA,Emma and Alice and have level 1 bloods. All will total to around 10k. The problem is. She called it a process of elimination however if 7/10 embryos made it to blast yeah it could be the embryo but I’m more thinking something with the lining. She also admitted that the adenomyoma is an issue. As it’s touching my lining and likely affecting implantation but again recommend it isn’t removed! So it’s a loose loose situation! I don’t want to spend a further 10k and it still fail because of the adenomyoma. I’m struggling to find any forums of stories / people with adenomyomas also? A lot of people have adenomyosis but not adenomyoma. so that’s a struggle in itself.

I’ve had my pre op today for my lap and dye and hystereoscopy next Tuesday. Praying it goes ahead. This might give some more ideas to what’s going on and good to have the hyst since it’s grown. It was 4mm last May when I had last hyst and it’s now 1cm. If it’s not going into cavity but touching the lining it’s still an issue in terms of implantation. :(

@Loz2467 I hope they can book your surgery in asap. How does it work out that expensive for the tests, that's a lot. They are all sensible and useful. I had those things done and era Emma Alice was £1500 level 1 implantation failure blood tests were £1500 and I arranged for 7 embryos to be tested and I think it was about £3500. You can probably get the level 1 blood tests cheaper, I had my friend do some through medichecks to get most tested, it's a autoimmune screen and thrombophilia screen. Thrombophilia screen isn't needed if they will just add heparin in though as that's the only treatment.

@Gardenlady543 I’m in next Tuesday so far unless I get cancelled! I just feel that even if they say it’s still not in the cavity I’ll be worried and assuming it’s the issue like my consultant has said? If you know what I mean? Like if it’s touching and it inflames and creates cytokines I just don’t know anyway around this. I wish I could speak to someone who’s had this issue then see what they did etc. but it’s hard to find things online. I just don’t wanna throw another 10k at it for nothing to change anyway. Thanks for that. The blood tests are only £355 at my clinic but she said she will ask my GP but I know they won’t cover it. It’s not expensive so that’s okay but it’s just the rest. More cost for probably no change in outcome.

@Loz2467 every test gets you further to the outcome, if I look at things like 2 x era Emma Alice and say ok well that cost me 3k and several months and didn't make a difference, then it would've be the whole picture. Until you've explored this stuff you don't know if there is something that can be optimised. I was able to move forward with the results in the end. That's great your surgery is next week, I'm interested to hear how it goes.