ERA/EMMA/ALICE Testing thread 4

[Janefx40]

New thread ladies! @Gardenlady543 @MyEasterEggs @seven201 @VenusStarr @Violette22 @Yuliaaa

Thanks @Gardenlady543 that’s really helpful. I wonder if having menstrual blood tested might be useful for peace of mind. Or maybe I’m just continuing to find opportunities to delay FET.

Good luck at your appointment. I’m heading down to London for appt with Raj Rai and I’ll nip to TDL to do final blood tests.

Thinking of you @seven201 are you home now? 💗 I am glad the hospital has reassured you about the testing process. I'm so sorry you're going through this. You will get through it xxx

Good luck with the surgeon tomorrow @Gardenlady543 let us know how you get on

@Yuliaaa I'm sorry you're not in a good place at the moment 💕 feels like a lot of us are struggling right now.

@birdbybird I'm glad you've booked. I emailed the nurses today with an update and one came back really quickly and was really kind which has helped a lot.

My head is going to explode. Realistically there is nothing I can do right now. Although that's not stopped me spending the afternoon on Facebook and Google looking for answers. One lady replied to me to say she'd had similar after a miscarriage and she's eventually got her lining up to 10mm and the transfer worked. They put it down to hormones settling after the loss. Which makes sense. Especially as I didnt respond well to letrozole when i previously had (allbeit slower than most) and my natural ovulation was delayed a couple of times too. I forgot to say, my thyroid is back in range now as well at 1.67 from 3.9, so the 50mcg helped. So maybe I just need to be patient 😬
My acupuncturist thinks we should just give it a go this cycle. If we do I'm not taking any of my immune meds or progesterone.

@Gardenlady543 the clinic in Athens replied really quickly and I was negative for Chlamydia, Ureaplasma and Mycoplasma in 2017 so I think I can settle the infection/microbiome side of things now. My partner is a concerned about him having been treated for gardnerella vaginalis when it didn’t show for me, but The Evewell said it could be a historical thing that there are traces of. And I could have it in the small percentage of bad bacteria couldn’t I? Sometimes this process raises more questions than it does answers!

@VenusStarr I think low oestrogen is a big culprit for thin lining, this seems to explain why I thicken in medicated FETs, but I'm thin in natural cycles. So it wouldn't surprise me if you need some time to recover and for your hormones to go back to normal. How do you feel about doing a medicated FET, I was off the idea because the estradiol makes me nauseated and happy my specialist was willing to do the unmedicated. But now I just can't see it being an option for me so think I need to stick with medicated.

@MyEasterEggs I think you can shut that one down now then. Gardnerella needs a high pH to flourish so you can prevent it by keeping your vagina pH low. Some people don't even go on antibiotics when they get BV, they just use the vagina acid product when they get symptoms.

That's the thing that's confusing me @Gardenlady543 the ivf doctor today said I must be producing good levels of estrogen to have a follicle that big. But it's not growing my lining. It is making sense about why i seemingly ovulate regularly but we don't conceive naturally though.
I want to do a medicated FET because it worked last time and I did my era, so everything is easier to control that way. He was geared up for us to do a natural one until he saw my lining.

But looking back, I didn't really have any negative symptoms with the estrogen this time round where last FET, I felt battered.

My acupuncturist is lovely, she's just sent me a couple of papers. Apparently having a d&c can affect your lining for 6 months. It's been 7 months just, but I also did 2 cycles with estrogen and progesterone within 6 months. So it's interesting. I think its pointing to me needing more patience. And giving myself time to heal. Which makes sense. But the other part of me is just thinking omg, just get on with it. I feel like I've achieved nothing this year.

@VenusStarr maybe it's the response to estradiol that's the problem then, some people have a higher resistant to it and need big doses of estradiol to get a response. Perhaps that's happening but will settle, but in the mean time it might be overcome by the medicated cycle. I feel like I've achieved nothing either :(

@Gardenlady543 that makes sense. My PH was fine when I did the Ecologix test and I’ve also followed a canestan protocol for BV. Appreciate you helping me figure some of this stuff out 🙂

@VenusStarr I am in the same boat. My estradiol level is always in range, ovulating each month, but lining is thin (recently E2 levels have been around the lower end, but still in range) and never conceived naturally after the miscarriage in 2015. It's just tiring. My consultant keeps putting the blame on my eggs, but I am not buying into that anymore. It's one of the reason I am changing her. On the other hand I feel like ivf failed us and didn't help at all. 🙄

@Gardenlady543 I hate the fibroid bit. Why does it have to be so complicated?! Good luck tomorrow! 💕

@seven201 I am thinking of you! Hugs!
@birdbybird Thinking of you too! 💕
@MyEasterEggs glad the endometrio didn't show anything wrong! Hopefully the extra progesterone suplementation day will solve the issues!
@Janefx40 hugs! I know you are struggling too.

Sorry if I missed anyone, but I am sending love to you all!

Sorry, struggling to keep up today.

Things have started for me. Don't read if you're squeamish. I've collected something but I'm not sure if it's the right thing. It's hard (nurse told me if it squishes it's not what I need) but dark, so leaving it in the fridge and will see if I get anything else. It's a pretty grim process. I also need to go in for an anti D injection.

I'm another in the thin lining club. What supplements do you all take? I'm thinking I might try supplements again. I used to try vit E (but got scared off by it starts with the egg saying not to take it with aspirin) and N- acycstaline (I have made up the name of that).

Love to all

@seven201 I am taking N-acetylcysteine vitamin E and L-arginine. I am not sure they are helpful because at the beginning of the year I noticed some improvements but last month lining was rubbish again. I stopped taking them during FET because I remembered you saying about vitamin e and aspirin.
I am sorry you are struggling 😔! Hugs! ❤

Hi everyone. I missed a lot today.

@seven201 sending so much love and thinking of you as you go through this. I'm afraid I don't know what the relevant bits are to collect as I had surgical. Hopefully someone else will know. Hope it's not too unbearable xxx

@VenusStarr sorry about your lining. I don't think estrogen is always the issue as my levels were fine in my cancelled FET but my lining was thin. Interestingly my period is also light this month but we know my lining was ok. So maybe it doesn't always correlate.

@Gardenlady543 good luck tomorrow with the surgeon.

@Yuliaaa thanks. Hugs back

@MyEasterEggs hope your appointment and bloods go ok x

@seven201 I hope you aren't in too much pain. Collect anything and everything. Mine pretty much came away in one (bar a tiny bit retained) but if you see any grey tissue, that is definitely pregnancy tissue.
I have found the contaction type pains stop when I pass the sac. Sending you lots of love ❤️

It's interesting @Janefx40 my period was quite heavy after we cancelled my FET but my lining was crap, it just didnt last long. I hope you're doing ok.

Dh is getting fed up with everything and quite upset at the money we've spent to literally have nothing to show for it. I don't really know how I feel at the moment 😕 the trouble is lining issues are so hard to predict. It could be totally fine next time, or it could be another shit show. Ugh.

Sending lots of love to all xx

Hi @seven201 hope there wasn’t any more and what you have in the fridge is all.

@VenusStarr I’m so sorry. I don’t like the effect this has on our lives. I feel like I have put my life on hold while I focus on this.

On the subject of infertility/autoimmune system/dr shehata, I had an interesting conversation with my mother who had alopecia after my sister was born, and she was “cured” around when my brother was born 8 years later when she was 42.
She always thought the alopecia was linked to the infertility but wasn’t certain.

@seven201 I hope you're doing ok ❤️

I spoke with the surgeon today.

The issue is the small size and location of the fibroids, he wants to get all 3 out but may need to escalate up:

The minimum he’s going to do is a hysteroscopy to try and remove the fibroids that way + lap to look (and treat if there) endo while also trying to remove fibroids that way.

He may need to move up to a open myomectomy, this involves a c section type scar, 6cm in the bikini line.

He said fibroid removal is notorious for adhesions which is the last thing I'd want. But he said mine should be simple as most of the time people have huge fibroids and loads of them removed and it looks like I just have the 3 small ones, he also said he may damage my tubes in the process.

He said if he sees my tubes are swollen which could indicate a hydrosalpinx he won’t remove them as he thinks I should have a think about whether to do that and there are lots of other things going on so he would rather that I didn’t wake up without tubes.

Recovery time is going to be longer than I anticipated, for a simple hysteroscopy + lap it is 1 night in hospital followed by 2-3 weeks until back to normal.

If it's open it's twice as long to recover, with 3-4 nights in hospital and then 4 weeks until back to normal.

Transfer wise, he said he recommends 2 normal periods before a transfer (or biopsy cycle) as the endometrium needs to regenerate. So I'm looking at November time.

He recommended 2 weeks sick from work and then 2 weeks working from home.

I spoke with my line manager and he asked if I'm sure about all this (the donor LIT and surgery), I really don't feel I have a choice, it's just rubbish as I think there's such a small chance of things working and I'm going to potentially end up with adhesions, abdominal pain for life, maybe issues being as active as I am now, life long scars and I don't even get a baby in return! This completely sucks, but it's either this or just be infertile forever while the fibroids get even worse.

Hello all. Sorry it's all quite shit for everyone at the mo.

@Gardenlady543 that sounds like a very productive appointment. I'd be annoyed if my manager said that to me, but maybe you have a different kind of relationship. I say go for it.

@VenusStarr the costs are so depressing aren't they. I'd like to think some progress has been made with money spent, but it doesn't always feel that way.

@Yuliaaa I think I may get back on those three supplements too! Thank you. I've got them all in a cupboard somewhere if I rummage.

@birdbybird that's interesting about the alopecia.

@Janefx40 @MyEasterEggs and everyone else,
love to you.

I have dropped off my sample at the hospital and had my anti D injection. Had an interesting night as at 2am the main thing I needed to collect fell down the toilet. Managed to get it out and the nurse said it didn't matter. Also managed to ruin a (luckily cheap and old) duvet with the mess while asleep, despite putting a towel down (towel stayed spotless!). Just glad it's mostly over now.

Thanks @seven201 to be honest everyone is asking me should I be doing the surgery and LIT, my closest friend is and I think my therapist well.

You have done amazing by the way, not only to endure the last few days but to endure it on the hottest temperature ever recorded in the UK. I hope this is now over and the physical healing can start. I think this calls for a posh new duvet set!

@seven201 ❤️ I'm pleased you managed to retrieve and preserve the pregnancy for testing. It's not easy to do it at home, in pain and last night with the heat. Sending you lots of love.

@Gardenlady543 thats a lot to take on board. I really hope that you can have the less invasive surgery and it does what you need.
I totally get the way you're thinking, to get this far and have those options presented. Of course you have a choice but it's a lot to think about and wonder. I just wish we all had some certainty over the future.

That's interesting @birdbybird I was talking to my friend about covid last week and how we've both never had it. They tried for years and never conceived (didn't go down the ivf route, they adopted a few years ago). But she said I never get colds either (like me!) And I thought I wonder if she also has immune issues contributing to their infertility. I didn't say anything, but just makes you wonder.

Lots of love to all. I hope things start to change for us all very soon xx

Gosh @Gardenlady543 that’s a lot to take on board. I know it’s not the same but when I was making the decision about whether or not to go down the IVF route, I had to ask myself if I’d look back and regret it if we didn’t try. If you can put other people’s questions and voices to one side for a moment, and really tune into your own wants and needs, do you think you would be able to settle if you decided against these procedures? It’s a hard one.

@seven201 what a traumatic few days for you. Hope you’re taking some time to recover.

Big hugs to you both and everyone else 💛

My train was cancelled today, and there’s a strike next Wednesday, so the soonest I’ll have the final blood tests is in two weeks. Might even delay another week as I’m moving home first week of August. I’d kind of decided September might be best for FET so there’s a little time…

@seven201 well done!! Feel so proud of you for getting through this. A really awful few weeks to endure physically. We're all here for the emotional healing too x

@Gardenlady543 that is a lot for you to take in. The surgeon sounds like he knows what he's doing. At what point will he decide whether it can be done by hysteroscopy or not? Do you get thinking time in between?

I actually find it quite useful when people ask me if I want to go ahead with stuff. Sometimes I feel like I'm just being dragged through all of this- one thing to the next - but it reminds me that I do actually have a choice on some level. It can make me feel just slightly more in control to realise that I can stop if I choose to.

@MyEasterEggs frustrating about the trains!! Why are so many things getting in our way!!

I'm utterly miserable and a bit out of control. Someone was talking in my team meeting about delivering training to managers about "women's health" because they should understand (amongst other things) the potential impact of the hormones you take for IVF on women. I just blurted out "well I've had 10 rounds of IVF and I never had a negative reaction to the hormones". It was so inappropriate - I'm so embarrassed. And also bullocks because loads of women react to the hormones as we all know. It just felt so personal to have someone sat there talking about how people needed to be trained in understanding me (although that wasn't what she meant). I'm all over the shop at work. I'm just an emotional mess and everything I try to do I screw up in some way because I'm just out of control and veering from one emotional extreme to the other.

@MyEasterEggs I do think this, I always said even if I never do another transfer I want the fibroids out. So I think I just need to do it and hope for the best. This is a new and additional problem to my already rubbish case, so all I'm doing is putting myself where I was a few months ago when it wasn't working. The surgeon said to me he can't guarantee this will make me get pregnant and I was thinking, oh I lost optimism a long time ago!

@Janefx40 he'll decide during the operation so he is preparing me for all options I think. I think the fact this is a choice makes it hard, there is no medical reason for me to do this, as in it won't improve my quality of life from a functional perspective which is how we'd decide to have surgery under normal circumstances, all it will do is improve my chance of pregnancy which still may never happen. I have this long document of all the tests I've had and it reminds me of someone with an unexplained chronic disease searching for answers, except in my case the objective evidence is there, I have no positive pregnancy test. It's just weird in the hospital wards there are frequent attenders, I feel like that.

Oh dear about the meeting @Janefx40 I think the problem is there is very little workplace support for people going through fertility treatment, some people breeze through, but it's so much harder for others. Workplace law is so far behind on this , so it's up to a company what they will provide, this makes people feel like they should power through, so I've had 0.5 days of sick leave in 2 years of IVF for example, and when I wrote down all my holidays I've taken it's ridiculous, for the first time ever I'm taking actual planned sick leave for this operation.

@VenusStarr are you with Create? I am too (with their London clinic).

My mum’s story is interesting but with me I catch colds very easily and have no other auto immune issue I know of. My husband has psoriasis but that wouldn’t cause any issue I think.
having said that neither he or I have tested positive for covid. We thought we may have had it in the early days but testing wasn’t common then.

That should say “no immune issue that I know of”.

@seven201 i handwrote a letter to myself/little lost bean the last time this happened. It helped me.
This time it’s felt very clinical as if the pregnancy isn’t real due to it being through ivf. I think (hope) I will get over this more quickly emotionally. Waiting for Monday’s scan….

I've just had my LIT, I think the timing is pretty off as the next one is due 18th august and then I do a blood test about a month later and I have a 4-6 month window for transfers, but I won't be recovered from surgery until November. They do the procedure in the order people arrive and I was waiting forever, when the person who walked through the door at the same time as me had left and they hadn't called me in yet I asked if I could go in as I'd miss my train otherwise and they said they slotted someone else in before me! When the nurse then took me down I asked if we could do it quickly because I have a train and he replied "next time come early" I said, "I came 15 minutes early (which he knew as he signed everyone in), I've been sat waiting for 1.5 hours!!" Anyway the conclusion is the blood product has now had a good trip round my body as I had to run to get my train!

@Janefx40 I'm sorry you're feeling out of control and low ❤️ are you able to book a day or two off work just to give yourself some headspace? Try not to be hard on yourself.

@birdbybird yes, I'm with Create Birmingham. My pregnancy and miscarriage felt strange too, I didn't even do a home test as i couldnt face it, it was all surreal - how have you found them with your loss? We didn't have the best experience. Are you having this pregnancy tested?

How are you @seven201 ? ❤️

Jeez @Gardenlady543that nurse has got a great bedside manner 🙄 how did you find the procedure?

I'm feeling very disconnected from everything at the moment. Pretty sure I've ovulated now, so will be starting FET again in a couple of weeks.