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.

@Gardenlady543 @2021ivfagain Thanks for letting me know

@2021ivfagain you can buy water kefir crystals, I got mine from Amazon, I used rapadura sugar and water to grow it, the bacteria ferment the sugar so the sugar content in the end product is quite low. I have a book of fermented food recipes like dos, I also regularly buy Ethiopian food where they make injera, I used to make my own vegan cheese using the water kefir but most people use rejuvelac or probiotic capsules, that has a cashew nut base so I gave up on that as the shells of cashew nuts are toxic and people say avoid them when it comes to fertility diet advice. Sprouted seeds are supposed to be good for probiotics (that's how rejuvelac is made). I should add I have always done this and I still had 0% lactobacillus, so I dunno how much use it is.

@Gardenlady543 Thank you. Do you have to drink kombucha chilled as I prefer hot drinks? I was feeling really good yesterday but starting to get discharge symptoms again. I never get a bad smell just raised ph and discharge, but I’m on norethisterone which affects it. I will try kombucha as well. I’ve ordered a test to check if it’s gone down. I’m also going to take more oral probiotics as I’m worried whether digestive enzymes interact with zumenon, so need to stop them tomorrow.

Do you think it’s possible to treat bv- related infections with oral and vaginal probiotics alone?

Hope you’ve managed to sort your antibiotics.

@2021ivfagain I don't drink kombucha, but I imagine as long as you don't heat it close to 40c it would be be fine.

I've seen some evidence that with the acid products and probiotics it can resolve but I would rather go for antibiotics close to cycles.

So happy your scan went well @seven201 and the outcome was different from what you anticipated. I know it’s impossible not to continue stressing and worrying in this situation, but the progress sounds very positive.

The GP consultant I spoke to today insisted that even though the sonographer did not see any obvious signs of malignancy, neck lumps should always be assessed thoroughly so wrote me a referral to see a specialist thyroid surgeon, waiting for the insurance to send me some options tomorrow so I can get one booked asap, but unless I can get to see one by Monday and they’re satisfied by just what they can see on an ultrasound, it’s likely I’ll be recommended blood tests and possibly a biopsy so fair to say this cycle will almost certainly be delayed and now I’m also worried sick of what these lumps may turn out to be ☹️. I’ve not told my clinic yet, going ahead with the TSH blood tomorrow morning, that will at least give me some indication. Have the nurse consultation to start treatment on Monday, I’ll probably go ahead with that to. Providing I’ll have a specialist appointment booked by this point, I’ll have to tell them then at the latest. It’s possible they could extend my Norethisterone prescription if the wish to do that to allow time for the results to come through so maybe there’s the option to just delay the cycle by a week or two rather than cancelling altogether and having to start afresh with the prep next month.
I’ve been in a terrible mood all day since my appointment and cannot think about anything else.

I'm sorry you've got this worry @clhiu I hope you can be seen quickly and get the all clear and it won't impact on your cycle. It does sound overwhelming. Sending love ❤️

@clhiu Sorry you’re having these setbacks. I was told by CRGH consultant and head nurse that you can delay your cycle with norethisterone up to and including cd32.

@Gardenlady543 I’m just wondering whether I’m getting a resistance to them. It worked well this time but feel symptoms coming back.

I'm struggling to keep up now I'm back at work, and the thread has moved fast today! You all made me laugh with the drugs drawer / room / zone chat - I've got a chest of drawers devoted to drugs and supplements 😂.

Just really wanted to hop on to say that I'm delighted to hear the outcome of your scan today @seven201 and I hope it's onwards and upwards from here x

I'm sorry to hear about your appointment today @clhiu and the impact it may have on your cycle. I hope you get to see the specialist soon x

Thinking of you @Enfys23 and indeed all of you x

Thank you @Faithhopelove83 how are you doing? Are you off on your holiday today?
I managed to calm myself thinking it was technically 6.5dp5dt (as my transfer was gone 5pm in the end as I was last on the list and then the difficulties with the embryo sticking in the catheter) so possibly a bit too early as I’ve seen people can have nothing morning of 7dp then faint by the evening or next morning. Trying not to think about how the difficulties with the transfer might mean it had less chance to work, or how much my ovarian reserve will have continued to drop off since last egg collection if we’re facing that again soon. I had months of delay with extra investigations for the lining issues. Two days left before OTD. Going to try and enjoy them and just think PUPO. Not looking forward to Sunday though. Hoping things go well for you @Faithhopelove83 xx

I am so sorry to hear about these complications @clhiu Try to hold on to the fact the scan was reassuring and hopefully the consultant can look at that and you won’t need a biopsy and then cycle won’t be delayed 🤞🏼

@VenusStarr How are you doing? You’ve been through so much bless you. I hope it won’t be too long until you’re safely home. I bet you can’t wait.

Thank you so much @Enfys23 . I'm doing ok thanks. Being at work has had its pros and cons - it's been a good distraction, but a pressure to try to get through it and finished-up. Just got to get through a half day and then we head off this afternoon. I've not even packed yet! (Well, apart from my drugs box!) Really looking forward to a break and change of scene. Just hoping we can be strong enough to face whatever the outcome of this cycle is. I've had lots of symptoms, which change and come and go - I just hope it's not the drugs fooling me. I did manage to get my progesterone retested on Tuesday and it's now what it should be, so that's been a relief. Just hope it was rescued in time. We will probably test tomorrow, but I'm so nervous and agree with you it would nice to just stay pupo. I'm glad you've been able to calm yourself. It must be such a worry given the catheter issues - did the doctor say whether that could affect things? I also completely understand the worries about facing another possible egg collection. I hope you manage to enjoy these last couple of days and I wish you all the very best for Sunday. Will be thinking of you xx

Thank you everyone 

@clhiu oh no, I'm sorry you've been set back again. Delaying with norethisterone sounds like it could be a sensible plan. Hopefully you get the all clear asap.

@VenusStarr how is dh?

@Enfys23 well done for hanging on in there during the wait!

@Faithhopelove83 have an amazing holiday!

Talking of holidays and drugs. How do you all take your drugs abroad? Is it enough to just take a copy of the prescription. I'm not sure of the rules and logistics of travelling with so many meds!

@seven201 have very limited experience of taking drugs abroad, except for a few Norethisterone tablets, omeprazole and vaginal probiotics which are all rather small and fit almost wherever. Having said that, it didn't occur to me that I might have to produce evidence these were officially prescribed in case of inspection so never brought notes or prescriptions with me.

@VenusStarr so you know when you ma be headed home at last? apologies if you already said, thread is moving very fast and I miss things sometimes.

I have a specialist appointment booked for Tuesday morning, that was by far the earliest I could get out of the option the insurance gave me, tried a couple more out of curiosity from outside their selection and the situation was much the same, most only had appointments form the second half of April onwards, I was lucky about this opening because of a cancellation apparently.
I also went to CRGH this morning to have my TSH blood tested, imagine my surprise when they told me they had to do both TSH and Thyroid profile 1 as they are mandatory tests before FET as they're only valid for 3 months so the ones I did 5 months ago are expired. It sounds like they had forgot as if I hadn't called to have the TSH checked they might not have tested at all so I'm glad I did, a bit surprised by the oversight if I'm honest. If they come back normal at least that'll be a good sign.
Because my appointment isn't till Tuesday and it's therefore highly unlikely I'll get all test results I may need before the weekend, I bit the bullet and just messaged them asking to let me extend NET as I will need a new prescription to do that. I didn't tell them the specific reason, just that I'll be waiting for results of an unrelated health issue that just cropped up and by extending it I'll be sure to have received it back on time before the start of the cycle. I'm not sure why I haven't told them why, they may well ask me, but I'm terrified of them just cancelling my nurse consultation on Monday and not letting me have it until the results are back if I go too into specifics, which would mean a definitely cancelled cycle.

@Gardenlady543 Thanks for the information on fermented foods/drink. I ordered probiotic optibac and put it in the fridge just in case. Wish I’d ordered it before.

Is anyone using special detergent to wash underwear/towels as it has occurred to me this could also be causing my problems now?

Also, when I go for scans, the lube really irritates me for days and I read this can also trigger bv-related infections. What do others do? Obviously, due to lower estrogen at the beginning of my cycle the scans can be uncomfortable.

Also, thought I would share a fast microbiome test service Home Diagnostics. They are brilliant if you know what you want to test for. If you want bv-related tests it covers a lot more: gardnerella, candida, Trichomoniasis and bacterial culture. I asked about bacterial culture and they said anything related to bv. They take 3 days to get results back. The tests aren’t too expensive and they are open 7 days a week.

@clhiu I can’t believe the tsh and thyroid profile have to be repeated. It’s so expensive. The one with antibodies lasts a year but it all adds up. I’ve not even booked my nurse appointment yet as don’t want to spend lots of money if infection has come back.

Also wondering if my nutritionist is always giving me good enough advice. The pro bio women probiotic has done nothing for me. I’m going optibac is better and at least it has three good strains which fight bv. I have read reviews where people have managed to fight bv-related infections by having 2 a day for a month.

@2021ivfagain I wash all my pants (which by the way are plain black cotton boring pants), without any soap at all at 60c. Towels I wash in nonbio skin sensitive washing powder. I have asked to have scans without the lube before, it's fine, on transfer day they don't use lube. Maybe if you are dry you can get some cream that you know you are ok with, they do loads of dry vagina creams aimed at peri menopausal women.

@seven201 I've gone abroad with drugs, for IVF drugs I take info about the clinic, like a print off of the protocol etc. but never been asked, I just send them through in my hand luggage. This time I took a dosette box of vitamins, as in my 13 vitamins per day. I didn't take the packets of any vitamins but anything prescribed I brought the box in case questioned, so prednisolone, hydroxychloroquine and levothyroxine for my recent trip.

@Enfys23 I have everything crossed for you. ❤️

@clhiu your gp is likely ticking all boxes just in case, my gp has referred me to the breast clinic every time I've gone in with any issue with my breasts at all, it's just them being super careful as they will be the first to get blame if they miss anything. Are you seeing an endocrinologist on Tuesday? I have seen two who specialise in thyroids and both told me to email them a future result so they can advise about my dosage, so don't worry if you don't have the results by Tuesday. I have TFT done a lot with medichecks and they either have my result the same day or next so you may have results by then, labs will be working over the weekend but the result team may only be in mon to Fri.

@VenusStarr how are you getting on?

I'm on metronidazole due to my freak out Thursday night, it makes me feel nauseated 😞. I need to decide whether to take 3 days, 5 days or 7 days.

Also, does anyone take doxycycline in their FET, if so what cycle days and what dosage? I'm going to add it into my FET protocol I think. Erg it's all systems go for me, last OCP tomorrow and then CD1 should be here Tuesday to Friday. I'm also repeating my LAD next week which I'm dreading in case that £4K worth of LIT has worn off.

Thank you @seven201 and @Gardenlady543

@clhiu sounds a sensible plan and I’m so glad you’ve managed to get an appointment so soon. Even private can be 6+ weeks wait these days. Crossing fingers thyroid blood results look good, I’m sure you’ll get them next week.

@Gardenlady543 I looked at this when it was last mentioned on here about empirical doxy being used in some countries. I chickened out as I’m so prone to thrush but it looks like commonly used for 3-7 days pre transfer usually stopping day before or day of ET. Exciting you are ready to start. How are you feeling about it?

@2021ivfagain I am very over the top about ensuring everything I use is fragrance free and hypoallergenic! I use Ecover Zero laundry products for anything that might be around or contact that area including bed sheets. I also only use Aveeno skin relief wash, which is soap/perfume free, anywhere near there. And only water for washing directly. I use cotton underwear only like @Gardenlady543 mentioned, and make sure gussets are all cotton even if a little lace in trim of some for more special occasions. I also buy (I mean I do also have eczema but it’s massively a decision I made because I was so prone to the thrush) leggings and tights from ‘Eczema clothing’ so that these are also cotton. I also try and make sure all my bottom half is as higher percentage cotton as possible if not wearing leggings/tights, and try to wear skirts and dresses bare legged in summer. All my PJs are 100% cotton (when I’m lounging about in evenings) but I now (TMI) always try to make sure I sleep without anything on bottom half to let the area breathe. I had to try out different lubes and found the Yes organic water based one best for me. No lube also gives me thrush. I take my lube with me to gynae appointments! I think using water on the speculum also works quite well as long as someone gentle and not in the driest bit of the cycle. I’ve not had an issue post ET though when they can’t use anything on the speculum. I have found the Optibac for women a godsend and taking one a day, or two if I get some warning symptoms, has avoided fluconazole after needing it weekly for years. I keep mine in fridge too.

Thanks for checking in @seven201 @clhiu @Gardenlady543 no news 😞 the doctor indicated this morning that if his bloods were settled (liver and kidney function) and if he got on ok with solid food, he could be discharged but we waited all afternoon for his results (still on a drip but he can get up and about) and nothing. Soul destroying as he's actually looking loads better, he's no longer Homer Simpson! I mean I'd rather him be there if he really needs it but not sure he definitely does now.
I'm just in the hotel room reading. Keeping everything crossed that he can be discharged and we can get home 🙏 I miss my cats and my own bed and him 😪 coming back to a bed on my own and leaving him there is horrible.

Thank you @seven201 🙂

Really hope your DH gets discharged tomorrow @VenusStarr and you can both get home soon x

Thank you @Faithhopelove83 how are you getting on? Keeping everything crossed for you.

Quick question for @Gardenlady543 would raised liver enzymes mean not fit to fly? Struggling to communicate with the doctors again (and they only seem to come round once a day). He's managing solid food ok, it's just his bloods.

Hope everyone is ok. X

@VenusStarr I guess it depends on how raised and if the surgical team deem him fit to fly. The airline may want something in writing from the medical team. How are you feeling about everything, have you got a date you're aiming for to fly home?

@Enfys23 that's what I've seen as well, looks like minimal is 3 days starting 2 days before transfer, so I'll probably do that, some people are on 10 days which seems a lot. I've seen some people say that it might help with implantation.

I hope you get some answers today @VenusStarr and can get him signed off to fly from the medical team and insurance company asap. They would need to make sure he was stable enough and not at risk of deteriorating on the flight. Remember good stockings to prevent clots and for him to stay well hydrated on way back too.

@Gardenlady543 I saw that too. It looks interesting. A short course like that should be fine. I’d be nervous to take more than 100mg daily. I’ve read a lot of research about LMWH and trophoblasts. If this doesn’t work out I wonder if I need the higher dose rather than just 20mg clexane. Also wonder if I’ll need to push to start immune stuff earlier in the cycle, it felt I was starting stuff quite late. There’s so much to think about. How do your team cope with your clinical background? Reckon there’s a lot of eye rolls that go on behind my back when I raise various things I’ve researched. But I feel most things that have progressed us are down to research I’ve done rather than any major thinking from the clinic. Feel there’s a lot of cookie cutter medicine that goes on there.

Just reading the posts about lives. It’s dawning me that i think the lube clinics use gives me thrush. Has anyone else found this? I’m triggering tonight for collection Monday so thinking there’s nothing I can do about it at this point! Why are some vaginas so sensitive 🤦‍♀️

*lubes not lives 🤣

@Enfys23 I think I saw most people are taking 100mg twice a day. I'm on 40mg Inhixa and prednisolone 25mg from cd7. I think at this point the doctors work with me, a combination of my background and how complicated my case is. So the doctor tends to call me for important decisions, which isn't their usual set up, but I think it's not a particularly nice experience to treat a doctor, I know when I've had treatment with other specialties they've told me it made them nervous.

@Lori2022 it wouldn't surprise me, I just got some clotrimazole 100mg pessaries from independent pharmacy, using one of them or some cream after a scan might be worth a try.