ERA EMMA ALICE testing thread #6

[Gardenlady543]

@Janefx40 @birdbybird @seven201 @Gardenlady543 @patientpatient @MyEasterEggs @thislittlebird @Yuliaaa @Violette22 @2021ivfagain @OrangeBengal @Enfys23 @Loz2467 @DEIVF @Hopeful199 @ER12 @greendress789 @Douchas12111 @Lori2022 @AdviceForJane @Anonbaby @Molls87 @ChickenT2b @GoldenElephant @IVF22 @StillTrying10000 @warrior101 @whatcangowrong @Yaynayokay

Oh yes it really has happened we are onto thread #6.

All are welcome to join us, we started out as people interested in ERA EMMA ALICE but we seem to have had every test available between us.

So if you want to know about the microbiome, reproductive immunology or you just feel your case is complicated and what like minded people to talk to about it you've come to the right place

@Gardenlady543 on the timings of meds, I’d recommend setting alarms for each on your phone. I’ve attached what mine looks like…plus I’ve got clexane and cyclogest in the evening. Keeps me right. I’d be lost without it 😅

Thanks @MyEasterEggs

I have just had the most stressful morning after I posted I realised my dog was missing, after planning to relax and take it easy with a day off work, I may as well have just competed in an Olympic gymnast event, I tore the whole house apart as I swore she was in the house somewhere. Panicked about how cold it is so went up and down the road, in the neighbours gardens etc. Called DH told him to come here and help me look.... She had got herself in the food cupboard in the house and was eating silently and ignoring me :( anyway she is found now, definitely a stress I didn't need.

@Gardenlady543 Really wishing you the best for this transfer!

Yeah I completely agree my only scan is 2 days before Egg collection! So no room to change / improve anything so I’m going to call today and try and get booked in for a day 8 scan too. My one on day 10 I’m going straight to work afterwards so I just don’t want to be taken by surprise with any news then be a state all day too whilst working till 10pm at night.

@Loz2467 what kind of work do you do, you may need to consider taking annual or sick leave, I found my ovaries got big and it was painful. You shouldn't be bending, twisting or lifting too much at this time.

@Gardenlady543 Thank you for the advice I have been stuck about time off between not wanting to sit at home (although I’d have a major clear out) nothing strenuous and being in work and not over thinking! I’m a store manager in retail. The store is open 10-10pm and large deliveries etc. I’ve spoken to my district manager and HR manager and they have both been very supportive and I can take whatever time I need. Just the 14th I will need to come in. Then from egg collection to transfer I might stay at home - what do you think? My AMH is 8.4 but 22 follicle count (not sure if some are empty) had a call with the Dr yesterday about endo and he said when it’s severe it tends to be in the ovaries and affect egg quality and they’re is no sign of endo and was adamant that brown spotting before period doesn’t mean endo but I’ve read so much about it but like you’ve said I just need to go for it now! See what happens and how my body reacts etc and take it from there! X

@Loz2467 sounds like you can need to work long shifts, have lots of time on your feet and need to lift stock around? You may need to play it by ear, could you do any office tasks working from home as the cycle progresses? You will need to take medications at specific times, go in for scans when you need. I found the time before retrieval was the hardest. An AFC of 22 is high so you may get pain, I found it to be like a feeling of fullness and burning sensation in the ovary region. Honestly you won't know about numbers and quality until you've got to the point of embryos being frozen. Try to focus on this bit, if the transfer doesn't work there will hopefully be more frozen and you can explore some tests before a frozen cycle.

@Gardenlady543

Thank you for your messages. I know how hard it is to keep on top of all the medication. It’s good you have time off work.

I had Flora Femme delivered so will start that today. I think I will keep taking oral probiotics.

Hope you have a relaxing rest of week doing fun things getting ready for Christmas.

I was told with ivig drip it lasts for 3 hours. It seems a long time. @Janefx40 Do you know if I would need to hold my bladder for that amount of time? I feel a bit silly asking but 3 hours is a long time.

@2021ivfagain I only had IVIG once a couple of years ago. I think I was able to go to the toilet with the drip in my arm but that was a different clinic. I think you'll have to ask them how it works there.

@Gardenlady543 sorry you had a stressful day but glad you found your dog!

@Gardenlady543 @Janefx40

Hi. Thanks

I am getting a bit worried as after taking norethisterone I always seem to get an altered ph. I checked today and it was 5. It feels like gardnerella again. If I have to take metronidazole again, I will have absolutely no lactobacillus left. I’ve sent away for a test. I’ve been taking canesbalance for 9 days now and it’s only helped a bit. I think I will use flora femme soon.

I do not feel positive about my transfer at all.

I've now gone and done a lot of research and got myself stressed. There are studies showing that when progesterone is high it leads to lower implantation and higher rates of miscarriage and they seem to have a cut off of 100 as being too high.

@Janefx40 I'm sure you said your clinic want 100 minimum and that they monitor levels a lot. They must think that this is therefore the best level?

I've got myself all worked up. Even if these studies are right they don't necessarily represent me since I'm on four different routes: own progesterone, sub cut, IM and rectal and the studies usually only look at one or two routes. And also my era seemed to suggest my body did not do well with what the studies consider a optimum blood progesterone level.

@Gardenlady543 my former clinic say they like it over 100 but actually the women there frequently have levels over 200 and sometimes over 300. They are extreme but they also have the best results in the business and I trust them completely on things like this. My current clinic upped my progesterone as it was 75 then 39 until it reached 145 (snap) 7 days post transfer and then they left it. 145 is a lovely level.

@2021ivfagain sorry you're not feeling hopeful. It's hard to have hope when you've had so many knocks. It can be so hard to believe that it will ever work. But it can work out and I really hope it does for you x

Thanks so much @Janefx40 that's really reassuring :)

After my stressful searching I realised that the people in these studies aren't like me. Dr Gorgy had told me he wants the level over 80 and clearly other RIs and specialist clinics have a similar view. I have had what would be considered a perfect level in these studies in the past and got nowhere, I'm a slow responder in the ERA so I just wanted to absolutely saturate the progesterone receptors and become receptive. I also saw in an immunity group a RI had told someone they want the level over 127 as that calms the immune system and I can see levels can fluctuate a lot, with lots of women starting off high and then lowering down. I am wondering if the side effects I was getting was actually the PIO getting into my system as it seemed to be happening on PIO days from a couple of hours after I took it. It's PIO day again today and I've felt quite well so maybe it's settled a bit. I'll have a 8dp5dt reading as well so will have to take all this info together and if this cycle hasn't worked out I'll go back to Gorgy and troubleshoot with him to see what could be optimized.

Hi @Gardenlady543 don’t stress re progesterone. I was monitoring mine for my successful cycle and it was always over 100. We in this group are not the norm!!!

Thanks @Dochas12111 I was thinking to mention you for your input as well as I know you were switched onto PIO. I guess I wanted it over 100 then started freaking seeing that this level seems to be detrimental but then didn't understand why all the RIs want it high in complicated patients!

Mine was over 100 in transfer day and has remained above that. Clinic wanted it that way, which is why I was on PIO.

@Janefx40
Thanks. I just feel worried that I will always be prone to infections. I could delay treatment but wonder how long it would take to build up my lactobacillus. I have ordered a test for gardnerella. I have to be careful about what I eat so much now but I’m having a few treats on Christmas Eve and Christmas Day. On a positive note, I had my tsh back and it was 1.29 and I’m not on any thyroid medication.

@Gardenlady543

I just want to reassure you. When I got pregnant with my son, who is now 2 years old, my progesterone was 155 on transfer day. It is better to have higher progesterone rates. My clinic for a stimulated FET cycle have a target of 100 for progesterone. You did really well with the progesterone and honestly mine was also high, and slightly higher in fact, and it worked. Please do not stress. I know it’s easier said then done, but you have worked so hard to get to this point.

Thanks @MyEasterEggs that's reassuring :)

@2021ivfagain Thankyou for the reassurance. My pH also goes up to 5 on noresthisterone, I freak out a bit when it's at 5 as I like it at 4.5 but it will fluctuate from time to time. When I had an awful microbiome it was a very obvious 7 as in the ph paper was completely blue.

Glad so many here have aimed for a progesterone of over 100 and this result being a good thing!

This is a weird question, but does anyone here have knowledge or experience or rhesus negative blood types and how that could impact a pregnancy?

I had my blood group tested out of curiosity. My blood type is A Negative. The reason I did it was because I knew my nan was rhesus negative and nobody had ever told me mine.

My husband is A Positive. With that in mind, and since we had one pregnancy that didn’t last long, is this something I should raise with my consultant? I feel stupid bringing it up because we’ve never even had a pregnancy beyond 5 weeks, but I know there’s this whole thing about issues with the immune system and negative blood and a positive baby and obviously we didn’t have a baby, just some cells, but would it be worth mentioning?

I'm rhesus negative too @thislittlebird I asked the recurrent miscarriage doctor and Dr Shehata and no one seems to think its a thing. But it does make me think. I've had 6 losses and only once had the anti-D injection which was after my surgery last year. But I've not been able to get pregnant since.

Definitely ask though.

Sorry I've not kept up with the thread, it's very busy! My dh has booked in with the urologist at crp. Getting mixed messages on whether his dna frag is absolutely awful or just a bit above average 🤷🏻‍♀️

Hope everyone is OK x

@VenusStarr interesting! I've just read online that they can do PGD testing to pick a negative embryo in some instances, here: www.ivf1.com/prevent-rh-sensitization/

It makes me wonder too. I find it weird they don't pay attention to this? It feels like giving us that injection in advance would make sense if it can't hurt? Or are you thinking it didn't help? My grandmother was told not to have a second child after my mother because of this blood type but obviously since then they've developed medication for it. I'm going to request an appointment with the immunes guy at my clinic and ask about it then.

Hope you're ok, we're having a follow up next week with the clinic and I'm trying to think of things to ask, but I feel like everything will be dismissed anyway.

Hi all,

I just had my first round of IVF where I had a failed fresh transfer of a 5ba. Everything looked good up till 8dp5dt where I started bleeding (makes sense as I have a 12 day luteal phase which corresponds with the time at which I bled)

I have 6 frozen top-grade embryos and will hopefully be FET some time over the next few weeks.

I think my problem must have been low progesterone (2 x 400mg cyclogest pessaries per day). Lining was 8.39mm 2 days before egg retrieval.

I'm gathering my questions for my next round so was wondering if you had any suggestions for what I should investigate before my next round? My clinic is not very helpful and don't really tell me much, although I will probably better moving clinics for any new rounds

Reason for ivf/icsi
Deep infiltrating endo - bowel / ureter - excised October 2021
Reduced AMH of 10
Low morphology

@VenusStarr just adding the screenshot attached to this Rh topic. I’m not aware of being pregnant before our October chemical but I have had a couple of late periods since we’ve been trying, I guess in theory I could have had a chemical but I don’t know that.

@thislittlebird I've been told that the risk is when your blood mixes with the pregnancy and they said as I'd passed the others naturally the risks were minimal. Also ive been told before 12 weeks the injection isnt needed. But as I had surgery for my one last year there was a risk of bloods contaminating each other, so I had it. But i was 8 weeks with that one. It's not a nice injection. But I'd rather take it just in case.

I'm on various Facebook groups and someone posted ages ago about blood types and recurrent losses and it did seem that there was a disproportionate number of rhesus negative posts 😔🧐

I've not been keeping up either but I am also rhesus negative! After my most recent loss I was given anti d, while at the epu. I did ask if I should have had it for my previous 3 losses, but she said no as they were all earlier losses. I don't know much about it. I take it we don't need it after normal surgeries?

@seven201 I've been told under 12 weeks antiD isn't necessary unless you have surgical management.

Do you mean any type of surgery? I think its only surgical management of Miscarriage. But I have heard some epus do give it regardless 🤷🏻‍♀️

sorry about the bold and paragraph weirdness, it's been like it for ages and its so annoying! Makes it so difficult to post.