ERA EMMA ALICE testing thread 9

[Gardenlady543]

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Spin101 @Loz2467 @Mybabydream @Janefx40 @ChickenT2b @kerrym87 @Sar1010 @AM08 @thislittlebird @IVF22 @APSR
@Faithhopelove83 @KLM25 @VenusStarr
@BewilderedBee @Dochas12111 @seven201 @StillWishingHoping

We've maxed out the other one so here's thread 9 😊

@Enfys23 I’ve travelled to and from on the train and tube, yeah, including once with a sperm sample in a sock in my bra 🙃, but my clinic recommend a cab home on the way back from EC which I did do. I’m not sure it was entirely necessary because I felt ok both times, and honestly never had an issue with sprays or whatnot, it is definitely unlikely. Once I had an EC and felt fine and went straight to Five Guys down the road for a burger.

It’s hard to advise as a Londoner because I’m so used to doing it all and it’s part and parcel for me, but if you got an air b&b or hotel nearby/central you could probably walk to some of the clinics, depending where you’ll be based. Travelling on public transport after 10 and before 4 roughly is better too, it will be a lot busier on the tube early and late in the day and might not be too comfortable if you’re worried.

Hi Ladies,

So stage 4 endo excision completed last Saturday. Recovering really well I must say.
The surgeon said it was an excellent surgery. They removed a 9cm cyst and said that the ovary remains in excellent condition so that was a surprise. He said they were genuinely so happy for me and can’t see any reason why I wouldn’t be able to conceive. I guess that’s good! Not that they’re aware of the immune side of things (dqa match and Kir mismatch).

So now it’s a case of recovering.. I feel absolutely fine in myself and wondered if there’s any risk in trying naturally as soon as next week. Question for the nurse I guess.

We said we would give it a few months naturally just incase the surgery has worked miracles before starting IVF.

But now I’m having second thoughts of going with Care and wondering if we should do it in Greece. That way, we could use a clinic working alongside an RI. It all feels a bit separate otherwise.
We’re actually heading to Greece in October anyway to pick up Neupogen and have a first session of LIT therapy. So perhaps best to visit a clinic whilst there and weigh up the pros and cons.

Anyway that’s my update for now! Looking forward to getting back to it and wishing everyone the best.

Thank you @thislittlebird that’s really helpful! I’m going to go down for the initial appointment face to face even though could do it virtual just so I get a feel for things.

@ChickenT2b thats great news! That would be amazing and I really hope you so get a miracle post the op. I don’t have the best experience with CARE so I guess you have to go with what feels right. Good luck in Greece and hope the recovery continues to go well x

@thislittlebird also the sock story made me laugh 🤣

Thank you @Enfys23.
Can I ask what your experience with care was like? We were looking at Northampton, I guess they will all have their differences also.

@Enfys23 I travelled to London for treatment. Found a premier inn 15 mins walk from the clinic and walked to and from the clinic. I felt fine to get a late flight home the day of egg collection but had stayed over the night before as didn’t want to risk a delay in getting to the clinic as trigger is so carefully timed. I stayed over the night of transfer too to rest. Also got a five guys 😃

@ChickenT2b great news about the positive outcome, I hope it does the trick and au natural works in the next few months!

@Enfys23 my concern about London and the tube would be risk of catching COViD and the impact on treatment, especially if it postpones/cancels treatment. It definitely seems on the rise at the moment. I’m currently abroad with work for a few days and concerned I’m going to get it. My colleague’s wife tested positive two days ago, while he’s been away with me, so hoping I don’t catch it from him. I’ve asked my clinic what the Covid policy is and implications if we were to contract it. Waiting on a reply. Also waiting on my Day 1 (due ~Sat) so hoping to start stims sometime next week. It’s all waiting, waiting, waiting, isn’t it!

I had my first EC and two FETs in London, NHS Guys and St Thomas, back in 2016. Similarly to @Dochas12111 , I stayed in a Premier Inn the night before. I was fine to travel home by tube and train afterwards. DH was with me.

@Dochas12111 good choices all round for us, I feel 🍔

@ChickenT2b glad you’re feeling well post op!

@Enfys23 good call on going in person. If it’s central it’ll be very walkable, so you may not even need to be on the train much., just bring some comfy shoes.

I was so bloody paranoid carrying that sperm sock around and they were so chilled when I rushed to hand it over to them when I got to the ACU at Guy’s.

@ChickenT2b it will definitely vary between clinics and CARE Northampton might be great. My local one made me feel like a number, didn’t feel there was a great deal of personalisation of treatment except when I pushed for things, and here there was very little monitoring in terms of bloods and scans. The poor communication and lack of empathy became more apparent by my 3rd cycle with them. I wouldn’t have stayed after cycle 2 but for the fact I was tied into refund package.

@thislittlebird @Dochas12111 @CailinInUK thank you. It’s definitely going to be pricey with the travel factored in!
@CailinInUK I hear you. I hope you steer clear of it. I think more people are testing again too. I’ve seen a lot of it in my work over the summer with people coming back on planes. Lots of people turn up with typical symptoms but just haven’t tested. My DH is on old shielding list because of colitis treatment and he got some LFTs sent out by the govt so they must be worried. I feel less worried than I would have a year ago, probably wouldn’t have contemplated it. But I have found wearing a good FFP3 mask effective so far. Touch wood been able to avoid it despite daily contact with patients who have Covid at times, and regular contact since. It’s a PITA wearing a FFP3 all day every day but for me it’s been hugely worth it. I hope it continues to work for us! It annoyed me really that while DH and I clearly mask up going into clinic the staff don’t respect that to wear a mask while with us at least. My DH tries hard and wears them as much as possible especially on planes but unfortunately when on work trips often has to room share, which is when he managed to get it.

Thinking of you @2021ivfagain hope you’re doing okay.

How are you @Spin101 ?

@Gardenlady543 how are you feeling? I do hope there’s improvement.

@ChickenT2b fantastic news about the operation outcome! I was with care, having a local clinic was helpful as it took me so many transfers. And I saw Dr Gorgy for add ons although my specialists were happy to implementing a lot of the plan like the steroids dosing, inhixa and intralipids. They weren't happy with hydrocychloquine though. And they will only prescribe up until 12 weeks so after that my gp prescribed inhixa and Dr Gorgy prescribed progesterone and hydroxychloroquine.

@Enfys23 when I've travelled abroad for treatment I've arranged scans locally and just travelled for the collection. I agree with @Dochas12111 about premier inns though they are always clean and nice and you know what you're getting. When I travel to London it is a very long day, I get the train at 6am and take a Uber from the station to De Gorgy. I'd try and avoid public transport with the amount of Covid around or at least wear a pair of gloves and ffp3.

@thislittlebird that's amazing that you carried the sperm on you!

My obs have been fine but I'm still symptomatic I think it's gradually improving, but I'm still pretty ill. I talk all day at work so I don't want to go back until I'm well enough as talking hurts my throat.

@CailinInUK we contracted covid during a ivf cycle (dont know how, but just had nornal facemask) and it torched my eggs and hubby's sperm were affected, our embryos didn't fertilise or divide properly and we didn't have anything to transfer /freeze. To avoid getting it all it will be essentially shielding from friends and family again ir wearing a mask the whole time, as said above ffp3 is the only one that gives maximum protection. I plan to do that for future treatments

@Gardenlady543 glad you're feeling better.

@ChickenT2b how did your endo get diagnosed? Since my last retrieval I've had pain at the top of my left thigh on and off. Bit worried it could be endo, might need to look into that before we do another EC.

My euploid transfer is on Friday PM and I'm already climbing the walls tbh. Considering going to Cornwall briefly to see the inlaws at the weekend while the weather is still nice, also to distract me from googling 24/7. Might swap Five Guys for fish and chips by the sea!

I've had a recruiter chasing me so I have to submit a letter today and do a call on Friday about a role. Not sure if I want it, but if they seem ok and this transfer fails I would consider it for the change of scenery and more money.

@Gardenlady543 @Enfys23 @CailinInUK @Janefx40

Thank you all. I think my husband thinks that it was only justifiable to have my MIL look after my son two a week if I was still pregnant as she has to catch buses and she is 69. However, I know she meets up with friends every week and catches buses but I suppose it’s a leisure activity. I know my Mum’s cousin who drives but is in her 60s looks after her grandson once a week. I do work from home but the issue is I have to work upstairs teaching online and it means if he has a poo I have to delay my next session and it can be really stressful. Also, I have to make time to feed him his lunch and change nappies in between. If I had help, I could do more sessions back to back but I suppose I am being selfish. My son will hopefully go to nursery in January.

I think my husband thinks it’s selfish as I need to earn extra money for the transfers and travelling to London.

This heatwave is terrible as some of my medication has been ruined with ice packs melting quickly.

@Enfys23 Regarding London I come from Plymouth so have been doing ridiculous journeys to London each day when needed. Husband has had to drive there and back which might be another reason for him getting fed up. I used to get trains until covid. Also they cost a fortune. To drive, it takes 10 hours a day in total ( so 4 hours there and 6 going back).

Regents Park is a nice place to go and have a brief break and park.

I have looked into air B and Bs but they can be expensive.

@thislittlebird Good luck with transfer. I know how stressful it can be. Cornwall is on the doorstep for me and it’s such a lovely relaxing place.

@Gardenlady543 Glad you’re better. I’m feeling a bit stressed as I have to wait for my period to come to do 3D sis scan first of all.

My consultant said due to my very low nk cells in endometrium and recurring bv which seems to be ok now, he would recommend starting steroids this time if I get a positive pregnancy test. So I would start steroids later. Does this seem ok?

I did have treatment last time for low nk cells which worked but it is not sustained. Do you know if steroids lower nk cells in endometrium after transfer?

@2021ivfagain thanks! This is embryo number 7 for us so my hopes aren't high, but it's still crap when it never works for us.

DH's family are from Cornwall so it's a nice excuse for a trip, but it will be very brief. Drive up Sunday night, utilise Saturday and then back home Sunday afternoon probably. There's an art exhibition at Falmouth I want to pop into before it ends in a few weeks, so really hoping we can get down there.

I'm on low dose steroids now for this transfer. My only positive test/chemical was when I self-medicated with pred for transfer 3. I'm hoping my theory is correct, and it's my immune system being a cow but we shall see. Probably more curve balls to come!

@thislittlebird good luck for your transfer. Have you had all the immunology testing ?

It was diagnosed in January via ultrasound at the gynaecology and ultrasound centre in London. Professor Jurkovic who I highly recommend. It’s not true that you need a lap to diagnose, providing the sonographer is a specialist.

I’ve never had any leg pain but a lady who was going for her excision at the same time as me does get leg pain from hers which is stage 4. Not to worry you at all as many reasons for thigh pain I’m sure! Jurkovic is your man though.

@ChickenT2b @thislittlebird my initial presentation when in my late teens/early 20s (besides the horrendous painful periods since they started that drs took no notice of) was leg pain and pins and needles down my leg with my periods. I got passed around ortho, neuro then gynae before diagnosis. It completely went with managing the endo for 10yrs or so but then back with a vengeance these days. I’m having a pelvic MRI in 2 weeks to assess how things are at the moment as told (well DH did) consultant how much I’m struggling with pain each month now. It’s worse each time. I do worry my pelvis is just completely inflammed and toxic to anything that tries to survive on there.

I decided to book into the implantation clinic at Warwick while waiting for next steps. Have my biopsy next week. It’s all info and hopefully might learn something useful.

@thislittlebird good luck on Friday. Cornwall for a couple of days sounds nice and fish and chips sound great!

@2021ivfagain thank you for the advice. So helpful to hear everything people have done.

@Gardenlady543 glad there’s signs of improvement. Take it easy if you can for as long as you can.

@kerrym87 that’s a good idea, I would definitely recommend it.

@Enfys23 It’s entirely up to you but could you book a mini consultation free with CRGH? Although communication is not always good, the nurses, doctors and embryologists are good. They do a lot of monitoring and use hgh zomacton to help increase number of follicles. They are a research clinic so might be able to help with endo.

@thislittlebird a break sounds good. Good luck for Friday :)

@2021ivfagain I haven't heard about starting steroids after transfer but you did implant and get to a scan fine this time so it doesn't look like implantation is your issue. It will be useful to know the results of the genetic testing. My endometrium nk cells were fine and I was on a high dose of steroids, in USA they put people on them without testing.

May have spoken too soon, my breathing is not good today so I'm worried it's got to my lungs. Just trying to rest but still move about. Will stay off work for now.

@ChickenT2b I've had NK cell testing and it was "normal", if a bit high in my opinion, doc doesn't agree so I had to fight for pred on the basis that I achieved implantation the one time I took it with a transfer. All of my medical conditions are related to my immune system and I'm convinced I have a very defensive or reactive body, for want of a better explanation.

@ChickenT2b@Enfys23 interesting, thanks, I'll probably look into seeing that doc if this transfer fails. I've never had period pains and this upper thigh pain is very odd, googling it suggested perimenopause or endo which did not reassure me lol. But 7 transfers in, I really do need to query if it could be endo in case I'm overlooking it.

Pretty sure mine is toxic too :/ @Enfys23. I really did feel like my body was fighting off the embryo when we transferred the 5AA in April, quite nervous about what will happen this time.

@Gardenlady543 staying off work sounds like a good plan if you're feeling rough.

and thanks! @Gardenlady543

Hi everyone,
I disappeared for a while- took myself offline and had a bit of a detox.
I just came on to say that I had a Laporoscopy on Monday ( early stages of endo removed from my pouch of Douglas, and everything else looked nice and healthy)

Was just wondering how quickly those that have had this surgery starting to try naturally? There are loads of different opinions online and my dr just said when you feel ready to.

It has also been suggested that I take this blood immune test "NK cytotoxicity, cytokine profile"
There werent really any signs of Immune issues from the biopsy but I guess blood can be different- I also suffered with outrageously bad atopic dermatitus as a child so perhaps a signal that my immune system isn't quite up to speed.
Its about £1k for the blood test so just wanted to gather some opinions and thoughts from you ladies.

S x

@Sar1010 that's great the surgery went well :) this is the blood immune testing I had- NK cell profile, NK cytotoxic assay, Th1/Th2 assay, Leukocyte antibody detection, HLA DQA1 typing, KIR.

I also had an autoantibody and thrombophilia screen.