ERA / EMMA / ALICE testing thread 5(!)

[VenusStarr]

Just setting up a new thread as we're coming to the end of thread 4.

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22

❤️

CRP say I can go for a scan end of next week. But it's £290 for the scan and consultation then intralipids are £380. Having a bit of a freak out at paying this for what is just a normal month of trying. I guess we'd only have to pay for the intralipids if it does look like I'm close to ovulation. I could look to find somewhere that would just do the scan and skip the intralipids this cycle. That might be an awful idea. I'm all decisioned out lately!

@VenusStarr I am so sorry to hear about the lining! It is really frustrating to have so many cycles cancelled and not know the cause of the thin lining.
I wanted to answer to your other thread. I tried a natural modified transfer last year. I took 1 shot of menopur for 10 days starting on day 2 or 3. The lining grew nice and thick, but unfortunately I didn't continue with the transfer because I got a painful cyst and some fluid in the uterus so I decided to cancel. As far as I know, if we were to have continued, I would have triggered with Ovitrelle, added progesterone and transferred.
I don't know how the ERA results might be affected since I haven't done one.

I was at the doctor's a few days back and we agreed that If I ever tried another IVf cycle, we would do a natural modified transfer. I was also listening to this US doctor who recommended natural modified for thin lining. Big hugs! 💜

@MyEasterEggs good luck tomorrow! Hopefully the results will be fine and you can proceed with the transfer later! 💕

@seven201 I am sorry things got more complicated and more decisions need to be made. It feels never-ending. Hugs! 💛

Sending love all!

@Yuliaaa thanks lovely. It was actually last Wednesday I made the trip - forgot to update here - and it was really helpful. Saw Raj Rai at St Mary’s for the TEG test to determine my need for aspirin/clexane. He also suggested testing my antinuclear antibodies due to other immune related issues so hydroxychloroquine may be included in my plan. And he tested my diamine oxidase activity. Never heard of this but it relates to histamine intolerance and deficiency of diamine oxidase can interfere with pregnancy. So I’ll report back on this. I think it’s just treated with diamine oxidase supplementation.

Also had a homocysteine test (my MTHFR mutation can affect levels apparently so wanted to make sure these are in normal range) and toxoplasmosis test (got a cat). A friend had a late miscarriage and tested positive for toxoplasmosis among other things so did it for peace of mind. These were normal/negative so it’s just the above I’m waiting on answers to. Got my fingers crossed I’ll be on less meds and not more!

Hope you’re doing okay 💛

@VenusStarr am so sorry. I just logged in to see how your scan went and saw the news. How crap. My clinic also said that it's not just the average thickness but where the lining is thick. But so frustrating.

I have heard of that type of modified cycle but not seen the results yet. Makes sense tho. I had better linings during stims sometimes.

@seven201 don't beat yourself up about missing the cycle. I know how hard it is to wait (believe me!!) but maybe best not to start on a cycle that has been disrupted anyway.

@MyEasterEggs sounds like a lot of info! Lots of stuff I've never even heard of. Let us know how it works out and hope you feel settled soon. Yes all the planning does my head in!!!

I'm ok. Mystery pain has gone. Probably just panicking unnecessarily

Love to you all xxx

@MyEasterEggs that sounds thorough, I thought about testing homocysteine as I have the MTHFR mutation but it looks quite hard to arrange myself and none of the specialists I’m under have mentioned it. I think I read that b12 reduces it and my levels are through the roof. So hopefully with a combination of b12 and taking methylfolate I’ll be ok.

@seven201 could you try the at home immune protocol if you’re trying naturally this month, I think people normally take Loratidine 10mg
Famotidine 20mg twice a day
Diphenhydramine (nytol) 75mg (or just 50mg which is the dose nytol comes in)
The doses always vary when I see what people are taking but those are the drugs people mention.

Oh no @VenusStarr that’s rubbish, lining issues are so frustrating it does sound like an investigation would be a good idea. I have heard other others doing well with low dose stims. Apparently letrozole counts as this according to gorgy as he mentioned it to me. But I know others take actual stims like menopur.

I’ve been for my second LIT today. I’m due to have my surgery officially booked in in the next few days so did a 9dpo test and it’s negative. So looks like the LIT hasn’t resolved any issues. I’m not sure things will ever work in me.

@Yuliaaa I'm glad you've made a plan for your next go.

@Janefx40 glad your mystery pain has gone.

@MyEasterEggs can't say I understand any of that, but it sounds like you've/they've been very comprehensive, which is great. Good luck on the rest of the results.

@Gardenlady543 sorry about the bfn. I guess the LIT could have worked, but this month just wasn't the one. it's good you're a little nearer to getting that surgery.

Thanks for the advice everyone. I've not heard of the home immune protocol (although remember you mentioning some of those things) garden. Would that be just to replace the intralipids? I have enough steroids and hydroxy to do those anyway. I'm leaning towards just paying CRP for the scan and intralipids. My self justification is that since the surgery we've tried naturally for 3 cycles and I became pregnant from two of them. Could have just been lucky then of course!

@MyEasterEggs I test toxoplasmosis yearly too, we have two cats and a dog and every year for the past 3 years I have been rescuing stray cats. I love them all and I can't keep my hands off them 😄. By the way, I tested the male cat for toxo a few years back and it was negative, but they stay indoor only.
I am in my tww after a more closely monitored cycle and a slightly better but still not thick enough lining! I must say I am being naughty and enjoying a glass of wine much too often.

@Gardenlady543 I am so sorry about the test result. It is so frustrating, but I am still keeping my hopes up fo you!🍀

@Janefx40 glad to hear the pain is gone! It must have been scary. 💜

@seven201 🧡

@Gardenlady543 so rubbish about the BFN. You’ve come so far and done so much, and with every step you’re hopefully getting closer 🙏🏻

I got the homocysteine test through Medichecks and went to TDL to have bloods drawn. So you can order it online. But you’re right in that when it’s raised, B12 would be low, so if your B vitamin levels are good it’s likely your homocysteine is spot on. I think I just needed that extra reassurance with everything as health anxiety is making its appearance just in time for first ever FET 👋🏻

@Yuliaaa ooh tww! I think having the odd glass of wine is fine. Especially if it helps with stress. Good luck!

@MyEasterEggs sorry to hear about the health anxiety. Treatment is such a tough thing to have to go through.

I’m okay @seven201. Had a lot support before deciding to try IVF. And I feel ready. It’s just a lot to process sometimes so figure the more I’ve done the less fearful I’ll be 💛

Thank you @Gardenlady543 we discussed letrozole but my previous experience with it is that its not good for my lining, so we've agreed injectable stims, most likely bemfola. In my fresh ivf cycle I got to 7.2mm and did implant. They don't want me to have another hysteroscopy yet, but if I have another cancellation due to my lining, I will.
I'm sorry to hear about the bfn ❤️

Thank you @Janefx40 I feel like I've become both the ivf clinic andDr S's most complex patient 😕
Annoyingly, I sorted out my progynova for the week and turns out I forgot to take it last night. I did however have a massive glass of red wine 🙃

Thank you @Yuliaaa I'm sorry about the complications you had last year. Good to hear that it did have a good impact on your lining. I think with the ERA, the good thing for me is I was receptive at 120hours, so hopefully it makes things a bit more simplistic. If I ever get there. Just feeling very flat about our chances to get to transfer.

@seven201 it all costs so much doesn't it. I told my sister that we owe the ivf clinic £400 for the cancelled cycle and she gasped. I've got so used to constant expensive bills, it doesn't feel real anymore. It also highlights how little people really know about the infertility world.

Do you want the scan to see whereabouts you are in your cycle? I hope you're feeling less overwhelmed today.

We're taking a couple of months off now. I've called my GP this morning to ask if they'll redo my cd1-5 bloods to check my hormones. The ivf nurse said it seems like my hormones are out of sync.

Love to all xx

@VenusStarr I hope the couple of months off gives you a good break from it all.

Yes, it's easy to not think of it as real money any more! But it definitely is!!

Yes, the main reason for the scan is to find out if I am nearing ovulation and therefore need the intralipids. But I've never had a mid-cycle scan there so I'd also like them to just have a good look to check on everything, especially my lining.

@seven201 the only thing I'd say about a scan is that for me, until I get my LH surge, the lining measurement isn't that useful. It can jump so much in the last day or two before a surge so unless it is super thin or super thick, I'm not sure how useful a scan at any other point really is. Useful to track ovulation tho. £290 does seem expensive but I'm not sure how much CRGH charge.

@VenusStarr yesssss to the wine. Did you need progynova if it's all been cancelled?

Haha! @Janefx40 I need to take 3 a day plus 3 utrogesten for a week and then I'll bleed. I'm saving my cyclogest as apparently there's a shortage.

I spoke with my GP and he was happy to support but wasn't sure the bloods would tell me much, so I'm waiting for crp to come back to me. I got upset on the phone though 😪 I have also got an ongoing PALS / complaint. I got a letter over the weekend about concerns I'd raised back in March after the scan showing potential scar tissue but it was a bit crap - they dont even mention scarring on the consent form. Anyway, I've been in touch with complaints today and the lady was so kind that I lost it again. The clinical director is on the case and they're arranging for a scan and then I'll have a follow up to discuss with her. I hate complaining, but I just want to understand why I'm having lining issues now after the surgery. I probably won't get answers, but I feel like I'm not ready to just give up yet. Even though I need a break.

How's things with you, are you in your FET cycle now?

@seven201 how long are your cycle usually? I've had ovulation intralipids as early as day 4 and as late as day before ovulation. So it might be better to work out a rough week you think you'll ovulate? Although I appreciate you weren't sure that bleed was your period, so it might be helpful to see what's going on in there. It's just a lot of money and I guess if you're not near ovulation, will it cause more anxiety? Xx

@VenusStarr oh I see. There are so many shortages at the moment!

Nothing much happening for me. I have had baseline so scanning and monitoring starts on Sunday. Possible intralipids on Wednesday depending on how things are going. Xxx

@seven201 maybe the at home antihistamines won't add value if you're already on immune stuff. I don't think it will substitute for intralipids, I think one of the USA immune places has made some omega vitamins that's supposed to be a substitute for intralipids. It's something about the right percentage of each type.

So my arms are all itchy from the LIT yesterday and I'm feeling very short tempered, tired and fed up.

Have had a argument with DH today as I've had enough as he doesn't pay for any of the IVF, his get out clause is to say that he'd be happy with a child but he's also fine if I don't want to carry on with treatment, therefore this is my choice, so he shouldn't have to pay. But at this point I've paid over £50k and I'm looking at how I can do overtime to keep affording to pay even though I often don't feel well enough to do what I do, add to that that I won't be able to afford to take more than 6 weeks of maternity leave because I need to get back to work asap to pay for things, it just feels like I may as well be doing all this alone right now. I've had to take myself to appointments and he expects me to make my own way to the operation, which I could do physically but my two close friends have said he should be taking me for emotional support.

Thank you for the info @Gardenlady543

Oh gosh, your dh should be being supportive. Could he financially help and is just refusing on principal? What you say about 6 weeks maternity leave is concerning - would he not support you then? If it's a case of him not having the money, then that's a different problem. It will be hard for him watching you struggle both emotionally and physically, but he should be doing better! The operation is a personal thing. I've always taken myself, but my dh has always offered to come too. Sometimes you have to have someone to pick you up too, as I'm sure you know. Sorry, sounds like a really shitty day.

Thanks @seven201 I earn more than my husband so we always thought he would be the main child carer and I would need to work, but I thought I'd have the finances to take 6 months of maternity but now it's costing so much I won't be able to afford it. He comes from a wealthy family but doesn't have much himself but he could afford to have paid something. I've told him he needs to speak to his family, I'm honestly so tired I feel like I might work myself into exhaustion, especially with the impact of treatment, it's just hard to keep going and I'm feeling quite alone at the moment.

It was just a hard day yesterday, I worked in the morning then LIT was 8 hours with the travelling there and back. When I got back I needed to replace a window mechanism as my husband can't do any DIY so my arms were hurting from the LIT and I was out doing it in the dark with a head torch on in the rain. Think I just got fed up at that point.

@Gardenlady543 do you have the kind of relationship with your ILs where you could ask them for support yourself? It’s sad that your husband won't reach out to them as it’s quite a small thing to do in comparison to the emotional, physical and financial commitment you’ve made to your joint future. If he won’t, then he really ought to be doing more to carry at least some of the financial burden. It’s a lot for you to be dealing with on top of everything else 💛

@Gardenlady543 are you still having your counselling? Sorry your relationship is feeling the pressure. We're incredibly lucky in that my dad contributes to our treatment, otherwise it would be a case of remortgaging. I do feel incredibly guilty about it.

It is slightly odd that your DH is happy to be the main child carer but then says he's fine if it doesn't happen. I hope you can have a rest this weekend? Then perhaps when you're feeling rested you and DH could go for a walk and try and talk it through to make a plan. Some people are better at chatting when out and about, not a sat down chat. Partners can be incredibly frustrating at times. Sounds a bit like he's burying his head in the sand.

@Gardenlady543 I'm so sorry about your DH. Treatment puts such a strain on relationships. I paid for all of our treatment for about a year because DP had a massive strop about the cost (and acted as tho it was my fault he hadn't known how much it all was even tho he had access to all the same information as me!). Ultimately I did know he'd pay me back but I didn't dare ask him for the money at the time.

We really struggled as a couple for a while there. Having had a forced break or two has been really good for us and allowed us to get back to our relationship. It made me realise that the relationship was still there, but when DP is stressed and unhappy it feels as tho it has fallen apart. It can come back once the stress is gone.

DP withdraws completely when he is unhappy and I have learned to accept that is just how he is. When I had the miscarriage and returned home from the scan, he didn't even look up from his computer, let alone hug me. I had no comfort at all through that process until the surgery when he suddenly felt able to support. Of course it isn't ideal but now I understand that he processes pain differently to me and unfortunately he can't support me when he's going through it. I can do it alone even if I'd rather not. Overall we have a good relationship but I have had to accept that I don't get that attentive, hand holding support.

It's not always the case but quite often it is the woman pushing for treatment and the man is more ambivalent. Or the man can feel excluded as so much happens to the woman.

We muddle on. And I just hope we can get back to a good place after all this is over.

I'm rambling. Basically I'm saying that it isn't ideal but it's also not unusual for your DP to be reacting like that. Hope you are ok xxx

Thanks @Janefx40 I think fertility treatments puts a lot of pressure on relationships, so I'm glad to see I'm not alone.

I had a 3 hour long chat with a logical friend last night who came up with some potential solutions.

@seven201 I'm still having the counselling every few weeks and have an appointment this week. So will bring it up again with the counsellor. Both the counsellor and my friend suggested some couples counselling just to help us communicate better, although I'm not sure if this is a good time to do it right before the surgery. My husbands way of dealing with this stuff is to wait for me to calm down and never address any of the frustrations I have raised, but I think I'm at the end of my tether now. I pay for everything financially and do everything around the home, he works away in the week. I've always paid for everything on the basis we would have children and he would be the main child carer. So I agree with you that his logic is stupid, basically he isn't career driven and hasn't made effort to further his career options to earn more so he could contribute financially, but I won't accept this in the long term if he's not going to be a child carer, he doesn't seem to see this. It's difficult for me to accept this as I'm a doctor and so are my close friends and we've all had to struggle to get to the point in our careers we are at. My DH has had a very protective life. I'm probably just an extension of this, he was privately educated and employed by his family, then he found me, he's continued to work for family and he's never had to go to a job interview etc and hasn't had to do anything out of his comfort zone career wise as I've always paid for everything.

@MyEasterEggs I've given my husband clear direction that he needs to have a conversation with his family to discuss whether they can contribute financially. I think this may be something I might need to address if he doesn't. Right now I cannot cope with the emotional and physical impact of treatment alongside working so much to pay for it all myself. I think I would accept this more if he made more of an effort to support me physically or emotionally. For instance I've been told my the surgeon I'll need to have support for at least 2 weeks after the surgery, especially if it's open surgery, my husband hasn't put any adjustments in place to his work schedule, he expects me to manage alone while he is away all week.

@Gardenlady543 he needs to step up and meet your needs, big time!

It hasn’t been rosy for us either. We very nearly broke up after our last loss a few years ago and that contributed to my decision to have a long break from TTC. I couldn’t commit to trying again until I trusted that I’d have my OHs support.

It was quite a dark time and took a lot of work on both our parts to get through it. I still worry that he’s not going to step up if I happen to fall pregnant again - for some reason he becomes quite impatient with me and doesn’t cope well with my anxiety - but time will tell…I feel like I’ve got a much better grip on things myself so I’m less worried about being unable to cope.

@MyEasterEggs my DP also gets impatient when I'm most upset although I would say he is learning, slowly, that I just need a hug. I think it's because he feels stressed that I'm upset and then reacts with irritation.

This is hard on men too. Not in the same way tho which means they respond differently and some of them are a bit crap at handling it well.