ERA EMMA ALICE testing thread 7

[VenusStarr]

Hi all. We're on our 7th thread! Really hoping for some more positive news in the coming months.

@VenusStarr not sure I’d use the term autoimmune, but I have a very reactive immune system. Allergies, asthma, eczema etc.

It’s not our nhs clinic, it’s our private clinic that’s resistant to pred. We’re just still with the nhs from our previous cycle because when we had our review I asked for further referrals.

@Gardenlady543 sorry the menopur didn’t work out. Do they think the letrozole was the issue? Seems weird with those numbers.

Istg I replied to this earlier, I’m losing the plot

@seven201 I'm sorry you're in pain with your teeth, I have a clenching / tooth grinding issue when I'm tense and anxious. I hope you've been able to get some rest and relaxation on your day off.
I'm ok thank you, really looking forward to the break away.
The strong lines are good, keeping everything crossed for next week's scan 🙏

@Gardenlady543 I'm so sorry you're sad and frustrated. My lining doesn't like letrozole so I have to use progynova too. But I'm sorry the menopur hasn't helped this time. Thin lining is one of the worst things as no one seems to know why it happens or how to fix it. Keeping my fingers crossed that there may be some hope with this cycle continuing.

@thislittlebird you sound very similar to me. Strange how the private clinic is resistant to steroids, there's just no consistency!

@2021ivfagain you've been going through a lot, I hope things calm down for you and that you get money back from the clinic's mistake.

I am so sorry that things couldn’t go ahead @2021ivfagain it sounds such a mess I’m sure you must have so many feelings of upset but also frustration and anger. I hope you can soon have a plan moving forward.

Oh @Gardenlady543 😔absolutely gutting. Cancelled cycles are awful and I know the pain of lining regression. I really hope there’s still some hope for this cycle for you.

@Spin101 I am sorry that you had no clear answers. Is it worth a second opinion? I think the embryology team really need to try and give you some clear guidance and opinion on what happened - perhaps you could write and ask? I think it’s a bit ridiculous that following your review you have to now wait so long to find out a plan for meds for next FET - did you pay extra privately to have that review sooner?

@thislittlebird thank you. Hope you’re doing okay. I am similar with lots of allergies asthma eczema etc. I feel lucky my consultant willing to do pred without testing. Cycle going okay. Started testing for surge now and have EWCM so think it’ll probably be around day 10 (Thursday 9th) as it has in past two cycles. I finally have a scan actually booked on day 10 this time (previously fallen at weekends) so I’m just crossing everything lining looks decent on Thursday.

@VenusStarr I really hope your DH feels better soon!

@seven201 dark line on first response sounds a good sign. Have everything crossed for your scan xx

@Spin101 www.amazon.co.uk/Just-Fitter-Bacterial-Vaginosis-Infection/dp/B096TP2KD2

Also free ones from EBay when ordering vagibiom.

@Enfys23 I’m feeling a bit lost as today would have been my transfer day. My husband is upstairs self-isolating. I wish my consultant had let me do a fresh transfer when I had the chance. I’m really getting worried about money. They just keep adding extra things. I also don’t feel I need neupogen infusion when my lining typically gets to 12.5mm or 13mm but it’s because I have some low nk cells in endometrium. I also have extra hcg infusion on transfer day for low nk cells. Does anyone else have some low nk cells in endometrium? My nk cells in blood were mostly normal with one that was 23 I think as they like it below 20.

I feel as well that if my consultant had suggested mock cycle earlier last year with Emma, era, Alice and nk cells, I would have done a transfer by now. As I was better last November/December and so was my husband until January. Sorry for the moan.

I ordered the vaginal tablets which @Gardenlady543 and @Lori2022 recommended. Do you know how long it took to arrive?

@Gardenlady543 I hope your cycle continues.

Also, for oestrogen priming I always take dhea 25mg (but will lower dose) with zumenon. My clinic charges £185 for 100 tablets. I have found the same tablets on iherb but had problems with them in the past. Do you know of where I can order them?

@2021ivfagain i just ordered some Sunday and they arrived today so pretty fast.

Im not sure whether to take them as my ph was 5 after a month of spotting so I ordered them and did a week of canesbalance and canesflor and my ph is now 4.5 🤦‍♀️
I’m starting stims on Saturday so it’s really a case of starting the flumozin tonight or leave it until after this cycle. GP swab said normal but I don’t believe them! Any votes on whether to leave it or take the med@Gardenlady543

I honestly have no idea what has happened in this cycle, I only have the experience of doing this type of cycle once before. I seem to respond to letrozole with a lot of good sized follicles and then my body just doesn't go with it. So last time I had one leading follicle and this time none. The menopur doesn't seem to have helped either. It's been 2 days since the last fyremadel and my estradiol is still low and I did a LH stick tonight and I've got the LH surge. So it looks like this cycle is over, they are due to do bloods and scan me on Thursday morning and even if I call them tomorrow that won't be brought forward.

I have no idea what to do moving forward the doctor said to remove letrozole and just take menopur, but if that was the issue wouldn't my fresh cycle have worked?

I have a headache tonight and I just feel tired and low about it all. I have 4 days of annual leave booked for next week since I was expecting to be doing a transfer and my work won't let me carry it over to the next financial year, so I'm off work either way. I could go away but then I only have about 2 weeks before I'd start another cycle to arrange all the meds and protocol etc and the only place I'd want to go is USA. I would need to go on my own, which is fine with as I don't really want to be around anyone anyway, but I only have a few days of leave, so it's a big journey for a short amount of time.

@Lori2022 I think pH 4.5 is fine.

@Lori2022 The fluomizin is being dispatched today but they were quite slow in reviewing it. I’ve also got antibiotics but want to see if this will help first.

I’ve had swabs done at GP surgery and they’ve said it’s fine when not. It’s like my clinic. They only test for a few things.

Canesbalance is really good. I was told this should be stopped 5 days before transfer. My nutritionist told me to make sure to take canesbalance on a block so for 1-2 weeks or more then add probiotics. It depends on the problem but I think it’s because I get bv-related issues a lot.

I’m going to take fluomizin but whilst I’m delaying period, so I suppose it’s different.

@Gardenlady543 I’m sorry your cycle has been cancelled. I think it’s worth a try with menopur. How much would you be taking? Could you take menopur every other day, as I do, but obviously lower dosage? Also, could you do a neupogen infusion the day you start progesterone? I have the opposite issue as my lining gets really thick but neupogen infusion could help in just improving the quality of the lining if that is an issue. I asked about neupogen infusion and that’s what I was told. Also with a fresh cycle they are looking more at follicles but with a superovulated FET they are looking at lining as well. Could you be given cetrotide towards the end if you are getting close to ovulation?

Another thing which probably is silly as your amh and fsh are good, but what about asking to do 5 days of oestrogen priming in the luteal phase just to thicken lining a bit before you start? It might be a silly idea. Sorry if it is.

Perhaps getting away might be a good thing but could you go somewhere closer?

@2021ivfagain thanks for the suggestions :) my lining is ok if I have good blood estradiol but the follicles were all shut down before they started to grow properly this time, so they didn't release estradiol and the lining did nothing. The doctor had suggested on Monday that next time they could scan at baseline and start menopur early and alternate between 75 units and 112.5 units.

I never expected this to happen, in the last few months I unexpectedly had a much more invasive operation for fibroids than I expected, a chemical pregnancy and then two wasted cycles looking to see if there was an abnormality and now the protocol that we thought we'd got right, has gone wrong in an unpredictable way :(

I really hope the doctor doesn't insist on putting me on fyremadel again as that seems to have caused an issue twice now.

I'm sorry @Gardenlady543 😞 lining issues are the worst. What did your lining do in your fresh cycle? Did you take fyremadel then as well? It's a lot to go through and process and makes you feel totally out of control.
Is your doctor doing your scan on Thursday?

I hope you are able to hace a break away somewhere xx

@VenusStarr no it's always the nurses that do the scan. Even though the doctor said I could start again with my period the clinic might say no as they make people have a appointment and wait for the protocol and prescription etc. My lining was ok in the fresh cycle but then menopur was higher dose and estradiol very high and I guess they would need to balance it so I have a milder follicular response.

I have a bad headache, I think it's the menopur :(

How would you feel about starting with your next period @Gardenlady543? Do you think having a review with your doctor would be helpful?
Can you have an early night tonight? X

@Gardenlady543 so sorry to hear your news. It must be so frustrating to have a protocol that worked before go wrong in an unexpected way. Hope the clinic can give you a way forward that you are happy with x

Sorry to hear your cycle is stressful @Gardenlady543. I still don’t know why my second cycle was so bad. Gonal F both times, slightly higher dose on second attempt and half the number of mature eggs. Sometimes it feels like pure blind luck that any of this works at all.

@VenusStarr @Enfys23 yeah, I can’t help thinking the ~reactive~ immune systems people like us have play some sort of role, a non-NK cells related role.

@VenusStarr I'm hoping I can get things arranged and start then as I feel I've had so many delays I couldn't control with the recovery from surgery and then need for the saline scan and hsg. I just want to get on with things especially as I spent so much money on LIT which only lasts for a few months. I've been taking nytol and getting some good sleep so at least that is a positive thing.

Thanks for all the support and kind words everyone.

No idea what's going on as my Lh surge is normally present for 36 hours and aside from being positive last night it seems to be lighter today. Will go in for the scan and bloods as planned tomorrow morning.

@Gardenlady543 So sorry this cycle has turned out not as expected. That must be incredibly frustrating and sad :( I really hope your consultant is able to give you some answers. I also hope you’re able to book something for your days off so you can get some much deserved time off and to yourself. I hope you feel better soon!

@Enfys23 Great suggestion! I paid to see the consultant privately as I didn’t want to wait for over a month to get some answers. The consultant is going to contact the lab and let me know what they say. I should probably email them too if I have further questions. How is your cycle going? Have you started yet?

@2021ivfagain thank you for the link. I’m so sorry about your experience in this cycle. Do CRGH explain clearly why they recommend certain tests to you? It’s so painful to feel treatment could have started sooner.

I’ve started to look at private clinics in London, but don’t know if I should wait for this lab report to come back first from the NHS.

@Spin101 Sorry I don’t know what you mean about certain tests? I took it upon myself to contact Invivo only because I was having symptoms. If I had no symptoms, I might not have been so focused on it. Also when my son was born via caesarean, they said I must have had an infection. I suspect it was gardnerella as he had to be taken back to hospital as a newborn and given antibiotics.

Do you mean about fresh transfer in November 2021? My consultant would not allow this to happen as I did mention batching but due to their delays batching did not work for me. I asked for oestrogen priming and was refused until I got bad. I asked for fsh to be tested and was discouraged until it got bad. If I had to repeat the experience, I’d dig my heels in. Sorry for moan.

As for a natural modified FET cycle, the success rates are similar to fresh transfer. The only issue is I have to be on steroids and my husband has a lot of sickness.

I’m sorry for the moan. Finding things difficult.

@Gardenlady543 so sorry its gone a bit tits up, its hard enough that the whole process is gruelling and unpredictable to start without the curveball. I don't respond typically and there response to 'I'm a bit complicated ' was simply....yes! 🤦‍♀️ it's often educated (or not so educated) guesswork which often passes us off and tried our patience. Hugs.....

@2021ivfagain sorry for being unclear. I misread your message where you mentioned if the consultant had suggested the mock cycle earlier. I read it as if the consultant had pushed for you to have EMMA/ALICE.

Don’t apologise, we’re here to hear each other out. I don’t understand why they said no to estrogen priming and didn’t test your LH sooner especially when you’re going private. I hope your husband makes a speedy recovery and you’re able to get a follow up asap to plan the next cycle. This process sucks for some of us and I really hope there is light at the end of the tunnel.

I don’t fully understand estrogen priming so need to look it up. I was on the pill before starting stims for EC and before starting medication for FET. I assume that’s some sort of estrogen priming but could be wrong. Will do some proper research tonight.

Hoping for positive news tomorrow @Gardenlady543 I'm glad you are getting some sleep.

Have you had your Ana antibodies tested @thislittlebird ? Mine are positive which does indicate some sort of immune issue just no idea what 🤷🏻‍♀️

Had a panic earlier and just felt really anxious. My prescription for gonal f came so rang 4 pharmacies and non had it in stock, one only had 450iu pens but said I'd need another prescription to say 450 x2 instead of 900 🙄 also they said they can't give a price until I've handed in the prescription and they couldn't tell me if it'd be 2 days or 2 months for it to be available. Googled an online pharmacy and had a chat with them, it's in stock but £500 😭 so called crp and spoke to my favourite nurse and she's sorted it, we're going to collect on our way home from the airport.
It just made my stomach sink thinking about having to navigate all of this again. Doesn't help that af is on the horizon... only one cycle left before we ttc again 😶😐 really not sure how I feel about it.

Hope everyone is OK x

Hi there. Just got my endometrial biopsy reports. Came back as Pre-receptive and states fet to be done 146 hrs after progesterone instead of 122 hrs. Also my progesterone a day before biopsy was 32.3nmol/l.
Was on lubion 1 and Cyclogest 2 per day for the biopsy round. Now the consultant recommended intramuscular progesterone for actual fet. So will the change in progesterone have any impact of receptivity window ?

@Gardenlady543 thinking of you and your scan tomorrow. If they do try and delay you further kick up a fuss and explain about your LIT expiring. Your fresh transfer protocol could have just randomly not worked for that embryo on that day. It's so fucking hard to know what to do sometimes. I think you should get away if you can. Maybe just a Uk city break for a couple of nights, go to shops, cafes, galleries, the cinema in a different place.

@VenusStarr sorry you've had a day of it. I'm glad you've got your prescription sorted. It's scary when things get going again.

@APSR I need an extra 24hrs of progesterone too. Sorry, I think you are MEANT to re-test if anything changes in your protocol, but I don't think many actually do due to the cost and delay.

So my toothache turns out to be sinisitis. I had some monitoring blood tests back today that showed an infection which we think is sinisitis, low b12 (probably due to steroids) and low iron. I feel a bit validated with my feeling poorly as I feel like all I do is moan about having some kind of cold or bug as this school year I pick up absolutely everything from school, I'm never not a bit ill!

Oh blimey @seven201 are you on antibiotics now as well? I didn't realise steroids can affect b12. Hope you start to feel better soon.

@APSR my era was receptive on 120 hours but when I did my FET we added lubion as well as 2x cyclogest a day and it worked (although mc for other reasons), so as long as you stick to timings, I wouldn't worry too much. When are you hoping to do your FET?