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 :)

Thanks everyone, after 4 years we thought our luck had really come around and even though my prognosis is bad I could be reassured that our surrogates was excellent, with her beta levels and doubling, every study I looked at the participants had 100% positive outcomes so I'm just in shock. They said it's not final but it doesn't look good, our only hope is that it was twins and that one is gone but then I'd expect the beta to be a lot higher. I just hope my scan is ok on Saturday as I don't know how I'd move on from both being lost.

@CailinInUK that is great news about the fertilisation rate, I hope you get a good yield on biopsy day.

@Spin101 what are your estradiol levels like during your cycles? my lining will only grow when my blood estradiol levels are good. I'm not sure what else to add, I took clexane from CD7, I did acupuncture and the acupuncturist had me use daily moxibustion sticks which are supposed to help with blood flow, I tried viagra in the past, but it didn't do anything and I got side effects, I know in Greece they have access to vaginal viagra which seems to work better, there is PRP, someone mentioned that Dr Gorgy does this, I also was recommended pentoxifylline as I have raynauds, but I never tried it. I'm
Sure I've posted this link before www.sciencedirect.com/science/article/pii/S1110569016300589

@Gardenlady543 I’m so sorry to hear that of your surrogacy journey and im
hoping for a good outcome for you. Not too long till your scan now on Saturday too. How selfless of you going through all this and being so supportive to this whole group at the same time! Your advice and knowledge helps us all! You really deserve for this to work!

My clinic apt with my surgeon is 5th June so 2 weeks today and I’ll explain everything and ask him to do lap and dye, Hysterscopy and the biopsy. Will also tell him about the area of concern near my lining etc. My withdrawal bleed has been crampy and clotty - sorry for TMI. Maybe I do just have adeno but I feel like I won’t be shocked if I somehow have endo. I don’t really know. Many of my symptoms are more adeno and not endo but we will soon see I guess. Then hopefully have my holiday and down Reg and then pred and clexane etc.

Unfortunately the update was bad, the beta has dropped to 300 in our surrogate and they have recommended vacuum aspiration. I had been hopefully as we were told there had been no more bleeding over the weekend. I really thought everything would be fine in our surrogate and that it would be me that had issues, so now there is a lot more pressure on the scan on Saturday.

@Loz2467 how long do you think you will need to wait for surgery?

@Gardenlady543 I’m really sorry. You are dealing with so much. I’m keeping my fingers crossed for your scan on Saturday.

@Gardenlady543 Please don’t put pressure on yourself. You are doing everything you can to be healthy.

I’m so sorry @Gardenlady543 . Despite the news last week about the beta lowering, I was hoping it was some measurement error or similar. It’s shocking for things to change so quickly when they were looking good. Was this the first surrogacy transfer? You mentioned cancelled and failed cycles before but I wasn’t sure if that was with the surrogate.

Hoping everything will be ok for you on Saturday. Please try not to put more pressure on yourself due to these circumstances. You are doing all you possibly can.

@CailinInUK the first surrogate we were matched with it took several cycles for her lining to get to the requirements with a few being cycles cancelled, we did a single euploid transfer and there was no implantation, then her period didn't come after she stopped the medication and we were advised to rematch, so did and then this surrogate didn't get her period for a while and needed to have one induced but her lining was excellent and she implanted. The only thing is her BMI is higher than most clinics allow. I will need to decide what to do to move forward but I guess I shouldn't decide until I have Saturdays outcome.

@Gardenlady543 I’m so sorry about your latest surrogacy news. I was hoping for you also. Crossing everything for Saturday for you.

Im hopefully pencilled in for the 13th June so not long. I doubt I’ll get a transfer in before my holiday so maybe they will do another prostap for me. But I’ve just checked the dates and another prostap will be due when I’m on holiday so hopefully they agree to 2 more prostap after my lap and then start estrogen as soon as I return from holiday. I’ve been reading some research to prevent a flare some REs suggest a slow build up of estrogen rather than 8mg a day as a rush to get the lining up.

I guess I have to go one step at a time and see what my surgery holds. I guess I’m afraid of things being so bad him saying there is no hope. :(

@Loz2467 that sounds sensible, as in the menstrual cycle the estradiol doesn't rise until the last few days before ovulation, I haven't heard of people titrating it up but I don't see why not, especially as I needed my dose increasing in the past and they are fine with doing that. Oh 13th June isn't long away at all.

@Gardenlady543 oh yeah I didn’t think about that. Hopefully I’ll get to find out how severe the adeno looks and if I have endo. Just can’t fathom how my miscarriage has caused me this many issues. Is so rubbish! :( also my dr hasn’t heard of using letrozole along with the Down Reg to suppress the estrogen further and help implantation rate. I might try and find the studies. The guy down in London who I went on the webinar with said a month of letrozole too! So it isn’t unheard of.

what if things are so bad I have to finish my IVF journey!

@Loz2467 I mean there always seems to be hope, it seems that people that have severe issues seem to have a better prognosis, I frequently follow up people that need big operations etc, it seems like issues like a lot of the time that are treated and targeted and then things work. In my situation I was told the prognosis was great at the beginning and now 4 years down the lien, I've used 9 embryos, including 7 euploids in me and 2 surrogates and I mean all I can do is hope that what's happening in me progresses. All we can do is try.

@Gardenlady543 I’m so sorry 😞 what a journey you’ve been through. I have everything crossed for a positive scan for you!

As always, thank you for your tips. I haven’t had bloods tested during my cycles apart from EC when it was around 15,000 if I recall correctly. I haven’t been diagnosed with raynauds officially but display all the symptoms. I’ll look into PRP. You have shared that link before and I could do with reading it again. I’ve been taking high doses of vitamin e but stopped l-arginine a while ago in case I need to go for another EC. I’m trying not to lose all hope but it’s so hard

@Spin101 did you try acupuncture with moxibustion sticks? That's supposed to help with blood flow too. You can ask for estradiol blood tests during the transfer cycle, it could be as simple as not meeting the threshold and a dose increase being needed. Aside from that, all you can do is try and add in as many of the extra things that might help that you can access and see how you get on. Erg including the horrible beetroot juice and slightly nicer but not great, pomegranate juice, it did nothing for me but may as well try in. Can you start clexane from CD7 like I did too? I've heard aspirin isn't good as it can affect implantation.

@Gardenlady543 I am so so sorry, there really are no words. After all you’ve been through and invested you deserve your baby so much, I think we’re all rooting for you here and hoping for good news at Saturday’s scan. It’s truly remarkable that despite what you are going through you’re still taking the time to help people on this chat, I really don’t think I’d be able to do it. I hope you can look after yourself and you finally get what you deserve xxx

@Gardenlady543 thank you! I only did one session of fertility acupuncture recently and gave up. I’ve had reflexology and fertility massages. I’ve googled acupuncture with moxibustion sticks but can’t find anything. Is it a new technique? You make a really good point regarding bloods. On the NHS they said they won’t give me more than 8mg of Prognova a day so I wonder if that’s why they don’t bother. I’ll ask about clexane too when I find a private clinic. I considered taking aspirin but am glad I didn’t now

@Gardenlady543 I can’t say I feel too hopeful. I’m just so worried if it’s that area and nothing can be done :( just completely out of my control and now I’m annoyed at myself for waiting so long to get seen etc. I knew straight after my periods had changed and I’ve had the spotting since July 2021! Nearly 2 years now! And I’m only just getting my lap. What if it is just adeno and no endo and there’s nothing I can do. So hard isn’t it.

Hope everyone is ok, I had a good nights sleep last night which is good. Just trying to block things out I guess as I can't get myself upset and stressed as it won't help anything.

@Spin101 I think they are also called moxa, they are these things:

Moxa Sticks - PowerKing 10 Rolls Pure Moxa Rolls for Mild Moxibustion Health Care Relieve Body Pain Massage amzn.eu/d/0uyQeHk

I was given some to use at home so you could always do it yourself even if you don't do acupuncture, you need to light it with a blow torch, I was talking about it on the thread a while back as I ended up having to buy the blow torch and then making vegan creme brûlée! Some of the other girls had heard of them as they sometimes advised to use them if a baby is breech I think, but only at the end of pregnancy.

From after the bleed stops you spend 5 mins a night moving it up and down on your lower abdomen over where your uterus is and also on the inside of your ankle close to the medial malleolus (it's the bony lump on the inside of the ankle). You don't use them after the transfer. My acupuncturist did a session pre and post transfer and followed the German protocol which I've attached. I don't know how much this stuff helps but thought I may as well try it.

@Loz2467 I think the why didn't I do this sooner is just a stressful place to be, I could say that about my fibroid, if that was my issue all alone then I could have saved myself years of heartache, but how are we to know, we rely on specialists to advise us.

I have had my swab results back today and it’s mixed. My lactobacillus has strangely become high. I have some lactobacillus crispatus and a large amount of lactobacillus Jensenni. However, I have fairly high result of enterococcus faecalis. I wash my hands a lot. It said it is treated with antibiotics but resistant to most and can be quite dangerous. Any advice?

@2021ivfagain did you have that bacteria before? I think someone might have had it, it comes from the gut. It is good that your lactobacillus results have improved. What does your specialist say?

Had a bit of a freak out today, with what happened to our surrogate, she it is just the worst for the anxiety I already feel. Decided to do a reassurance urine tests and they look fine, so just need to wait out Saturday now.

Sorry I hope you don't mind me messaging on here but I am not sure where else to ask. My clinic are a bit vague with this sort of thing.
My results came back with extremely low Lactoballius and doc wanted me to take Canesflor. My 2nd FET is on Monday and Id really like to keep up the Canesflor as I have only had 5 days of it so far. Do you think it would be ok to take the Cyclogest and Canesflor? Or should I stop with the Canesflor and just hope my Lacto has raised?

Sending love to everyone right now- I am not great at following this thread atm but I honestly feel very lucky to be able to ask and read others thoughts and experiences. It's hella lonely out here sometimes!

Hi @Sar1010 I am taking daily vaginal probiotics in my current FET, I stopped the night before and night of transfer. Currently 22dp5dt and still using once at nighttime. I use cyclogest PR, the main reason for this is I figure it's probably best to put as little things in vaginally as possible. I can't see an issue with using both vaginally though, just try and space it out a bit to let one absorb before the next goes in.

Canesflor is the easiest to get hold of in the UK but there are some better ones, gynolact which you can get from Europe and the ultimate one is flora femme from USA. I also like vagibiom, again from USA, but would avoid this around transfer or implantation time as it has acid in it and I think it's best not to alter the pH at this time. Saying that, I know someone that used vagibiom daily in a transfer cycle right up until the 6 week scan and they are towards the end of their pregnancy now.

@Gardenlady543 I know you’re right and if I knew my issues were that bad back then I would have started. I just can’t comprehend the reason I lost our baby girl is likely the reason I can’t concieve again. They are saying the loss caused the adeno as I’ve obviously had no issues with periods / cycles / fertility before and it’s common to happen after inflammation and childbirth. I guess I just have to wait it out now. Im assuming my biopsy done on the NHS will be very basic. If more transfers fail I guess I’d try the emma and Alice and see if anything was found there. I just don’t even know. Could be a whole bunch of things couldn’t it. A start is my lap and hystereoscopy x

@Gardenlady543 glad you got good sleep last night and urine test was reassuring. I imagine the week is going slowly for you.

@Loz2467 someone posted on the main Infertility chat about spotting for many days before period, if you wanted to touch base with them. Hope your op is helpful in resolving this.

@2021ivfagain good your lacto is now high. So your atopium vaginae (BV) is gone now but you’ve got some AV associated bacteria. I found this article, which might be worth a read:

https://www.mdlab.com/forms/TechBulletin/Aerobic_Vaginitis_1.2019.pdf

I had a Day 4 update today. They used to do Day 3 but stopped this ‘as didn’t want to unnecessarily disturb embryos’ (cost/time saving too I imagine). So I asked for a Day 4 call as they were looking at embryos anyway to do the assisted hatching anyway.

Out of the 8 fertilised, all 8 still progressing. We have one early blast, five morulae and one compacting so fingers crossed that some make it to biopsy tomorrow and Thursday.

I’ve just been Googling, as you do after an embryo update. And it’s ‘morulas’, not ‘morulae’. Not sure where I picked that up from!

@CailinInUK Yes lactobacillus is high but it’s not AV. It’s kind of like strep D. It’s Enterococcus faecalis.