ERA EMMA ALICE testing thread 10

[Gardenlady543]

Last thread is maxed out... happy for anyone new to join to chat about anything ERA EMMA ALICE or pretty much anything else fertility investigations and treatment related

@2021ivfagain @Enfys23 @clhiu @CailinInUK @Loz2467 @Mybabydream @ChickenT2b @kerrym87 @Sar1010 @thislittlebird @APSR @VenusStarr
@Dochas12111 @SallyLovelady @Lyrabee @Lauralozzle @Sera9 @Twigg12 @Wren123 @Summerishere83 @Vicky81B

@Gardenlady543 thank you so much I think this is my thoughts I just needed some reassurance that is the right thing to do, I’ve already got so many regrets I don’t need anymore. I will order more of the Florafemme and do a Fertilysis at my period and see what that says. My consultant also prescribed me gynoflor have gynolact coming too. Thanks again for the support I really appreciate it.

@Serendipity24 thank you also for responding this is really helpful information.

@Enfys23 so sorry for the delay. A little update from me. I am now 20w and 4 days. Everything is good and can feel baby girl kicking :). Definitely feel less anxious now just still unsure on how to continue with treatment.

I’m ok route to Dr Gorgy for IVIG which I’ve been having every 4 weeks. Ideally this will be the last one financially. But it’s hard to know how to make that decision. @Gardenlady543 did you test NK/cytokines after 24 weeks or not?
And what about LADs? Do we know anything about the risk of lads dropping past 24 weeks?

I will spend what is required but really only want to do it if necessary, not for the sake of. I thought LIT lasted for 6 months so just not sure why I need to test again. Hmm

@Enfys23 how is everything going your side?

@ChickenT2b lovely news 💕. Sorry I can’t help advise on the immune treatments. Must be a tough call!

@Dochas12111 thinking of you and hoping all well.

@ChickenT2b I am starting oestrogen priming soon ahead of our 4th egg collection in September 🤞🏼. Think DH is still hoping this current 4th cycle of trying naturally works so we don’t have to do the IVF. I’m having oestrogen priming for first time and a different stimulation and double trigger. We will hopefully get enough to do PGTA and a freeze all cycle. I’m feeling quite nervous really and quite emotional this weekend as we’re at a family wedding (we got the invite when I was still pregnant) and I keep thinking I’d be 30+ weeks pregnant now. Not having to fill consent forms and arrange Stork meds

@Enfys23 very tough about the wedding. I hope you are managing to do some small nice stuff for yourself. It is such a tough road. Really hoping that this next cycle or next round is the one for you. it’s good to hear things are being changed up a bit for this cycle. How many embryos do you tend to get?

I am 12 weeks on Friday so plodding along but so far so good 🤞🙏🏻

@Gardenlady543 how are you getting on? Any progress toward transfer for you or a surrogate?

Hope everyone else is doing ok.

That’s good news @Dochas12111 will be thinking if you for your scan and checks.

Thank you. I’ve only had between 1-4 eggs retrieved with max doses of FSH. We have had 1-3 blastocysts. So not great. Hoping the changes make some difference.

@Enfys23 I’m also a poor responder. I found I had a better response when taking letrozole for days 1-5 alongside Stims. Could’ve worth asking if it’s ok to do this with oestrogen priming? It’s just tablets so nothing massively invasive. I was also on max doses of stims. That’s a good rate of eggs to blasts though!

@Enfys23 Good luck with next cycle. I found zomacton good with oestrogen priming and also Dhea. Oestrogen priming itself is a game changer as it ensures more eggs to be available as they grow at same length.

My transfer was cancelled again as lining was too thick. I did do some oestrogen priming but not a lot but 43 now so progesterone is lower. My body seems to be producing too much oestrogen and not enough progesterone so I am on a different protocol now. I started norethisterone on cycle day 5. I will be on this for 3 weeks. As I over respond to fsh injections for my frozen transfer, my lining has to be ultra thin. I bled really heavily for two days, then third day was light and fourth day barely there. I’m worried I can no longer do a transfer. Even medicated lining needs to be thin and my lining gets naturally thick.

I am not allowed any oestrogen or Dhea but oestrogen still feels high. Norethisterone is suppressing fsh slightly and suppressing ovulation.

@Gardenlady543 I hope you’re ok. What are your next plans?

I am worried about lining issues. Consultant wanted to investigate if lining keeps getting thick but I have not had a natural cycle since my miscarriage which is nearly a year ago this month. I take norethisterone monthly which suppresses ovulation so I am wondering whether all follicles are building up and that’s why oestrogen goes sky high sometimes.

I’m not getting night sweats which is brilliant, skin is good, have more energy. Oestrogen feels very high in lots of ways. Should I be worried? They could not find a cyst. I’m just hoping to move forward. But on cycle day 3 when I was still bleeding lining was 6.2mm! I’m now on 3 weeks of norethisterone but feel oestrogen is as high as it was in my early 30s. It’s good but should I be worried as I’m 43.

The only thing I will add is wheatgrass as immune system is terrible at present. I keep getting a dry throat but feel ok. When son was at nursery, I picked up viruses every month.

@ChickenT2b happy Bon Jovi week! no more blood tests for me after this point no, time has flown by! How are you feeling?

I'm sorry @Enfys23 summertime sucked particularly badly I felt :(

@Dochas12111 ❤️ exciting times, so we've been back and forth a lot with surrogacy, we were offered a surrogate and then she had issues arise so was unmatched and we waited again. We have been matched again with a different surrogate who has started FET meds but we've been in this position before and something has happened and it's all been cancelled. Feels very strange, we have two single transfers left in surrogacy and then that's over. So I would then be looking at either more collections or setting a limit to use my remaining embryos and going back into investigations and immune treatment and weaning off breastfeeding which I really don't want to do at this point.

@2021ivfagain oh that sucks that you have the lining issues to deal with :(

@Gardenlady543 I have read that higher oestrogen could also be connected with higher fsh. I am having acupuncture soon but really need progesterone to be higher to compensate for high oestrogen. My lining needs to be below 4mm to start transfer but other people are allowed it to below 5mm. Reason being that my oestrogen gets super high which makes lining ultra thick. Last time I had 8 follicles on mild stim for frozen transfer and oestrogen was 2500. My lining went up to 19mm after ovulation but I think I ovulated both sides.

Hi ladies. I have been bleeding for 7 weeks since era biopsy. Within this time the bleed stopped for 6 days of spotting then straight into next bleed/period. Clinic scanned me last week. They found a simple cyst and assumed it was hormone producing but bloods showed normal estrogen and progesterone levels. So they can't tell me why. Its worrying. My snear test is due in a few months so im going to book that in as soon as i stop bleeding. I don't know if I'm being silly but I'm starting to worry about cervical cancer. They found hpv 4 years ago but when I had colposcopy the results were clear and I had a repeat smear one year later which was clear (3 years ago). Clinic want to scan again this week and see if it's gone. Next plan is to stick me on norethesterone to stop bleeding if still going this week, which is all well and good but doesn't explain why.

@Prayformiracles oh dear, this sound horrible :( I haven't heard of this happening before, have you seen your GP? Fertility clinics could just be looking at it from the treatment perspective. I'd be worried about anemia/low iron with bleeding for this long, so they could run some blood tests, they could ask for advice from the gynae team to see if there is anything else that should be done at this point.

Thank you. They ran bloods a few days ago. My iron is just on range but my red blood cell count a little low so they have just told me to continue on the iron supplements I'm already taking. The clinic consultants are all gynaecologists I believe. I thought about going to my gp today but assume will advise ultrasound (which had) and smear tests. I'd rather get the smear test privately as its not too expensive and the NHS take 2-6weeks for results but only a few days privately. I need to stop bleeding before I can have it done. Really want to do it ASAP for peace of mind.

@Prayformiracles they will be gynecologists that specialised in fertility medicine, most just do the fertility medicine and don't do core gynae stuff on the NHS anymore. That's interesting about the private smear, how much does it cost? The NHS now only look for HPV and then only look for abnormal cells if it's positive, but I paid privately for the HPV vaccine so I am worried that they could miss if there's abnormal cells. just looked at Nuffield and they do both.

@Prayformiracles I think you can still have smear when bleeding as that doesnt affect result, please don't wait and worry. That's a long time to bleed x

@Prayformiracles I’m so sorry you’re going through this. Have you thought about having the hpv vaccine? I know it is expensive but they are saying it can be effective if preventing things coming back or helping immune system.

When you are able to, I would also use vaginal probiotics like Vagibiom continuously. I have read that a strong microbiome can fight infections. The main thing is making sure you have an acidic vaginal ph. I use norethisterone a lot. It’s brilliant but it can raise ph and that is what has contributed to my gardnerella. I would say make sure you use plenty of balance activ and Vagibiom. Lactovaginal is one you can use simultaneously with balance activ. It’s just I had a terrible time with norethisterone in terms of raising ph. I am using norethisterone for 3 weeks so I’m using balance activ twice a day with lactovaginal and Vagibiom in the middle of the day on its own. Still on garlic tablets.

I’m also going to have hpv vaccine next year as I was too old to have it previously but didn’t have sex until quite late in life anyway. My husband is having hpv vaccine now as he’s 45 next year. He was not keen on it and didn’t know much about it, but I was worried.

I’m so sorry you’re going through this. I have read that vaginal probiotics are a good thing. I will keep taking these forever.

@Gardenlady543 I have looked at websites where you can get a detailed hpv test done. It’s a shame that men can’t be tested.

@Gardenlady543 Also privately they have recently stopped to 2 vaccines instead of 3. I’m worried as I took clindamycin twice but now I’m constantly on probiotics.

Thanks all. I hadn't even thought about hpv vaccine as I thought it was just for young people. I just had an email form Consultant saying he isn't worried apart from making sure iron levels don't keep decreasing but he thinks the prolonged bleeding is just my body taking time to get back to normal following the progesterone from the era medications. Everyone else I tell thinks its too unusual. But I guess he is the professional.

@Prayformiracles I’m pleased you feel better. It is worrying. I was worried and still am about abnormal lining. I have been on hrt a lot for cycles and worried about risks.

I had a prolonged bleeding when stopping progesterone but not as long. However, a cyst could change things.

You can get the hpv vaccine up until the age of 45. From my research, it must be avoided in pregnancy but it is safe if breastfeeding. That has made me pause at present but after all the cancellations I should have had it by now. I will have it next year.

One thing that might significantly help with iron levels and balancing hormones is wheatgrass.

Thank you @Dochas12111 I will definitely ask about this. We have been told that the number of blasts we get is more like someone with 12 eggs collected. I hope that at least continues.We are going to do PGTA and freeze all this time if we get enough. Apparently the Pergoveris stim injection is particularly good for those with DOR - we will see. I’m trying to be positive. @2021ivfagain I really hope I do better with the oestrogen priming. I had my peak today so I start the oestrogen in a week. Then baseline scan is provisionally booked 27/8. I hope you’re doing okay.
@Gardenlady543 wow that sounds a lot to think about. I really hope the surrogacy journey goes well for you.

@Enfys23 how are you getting on? Have you started Stims yet?

@Dochas12111 how are you?
I’ve just started today. Had baseline scan yesterday and they were happy with that. I finished oestrogen Priming. Had some spotting yesterday then full flow today so they have got me started on stims this morning. Is this usual to start stims on day 1 of full flow? I’ve never done a natural start before only timed with norethisterone so feels unusual to me. Hope it’s ok. I have scan week today on Day 8

@Enfys23 I’ve only done fully medicated so I am not sure either! Glad the baseline scan went well though. Hopefully some good growth by day 8. Keep eating that protein 😂😂

@Enfys23 Good luck. Oestrogen priming did work well for me in terms of follicular growth.

@Prayformiracles Hope you’re doing ok.

@Dochas12111 That’s good news things are going well.

@Gardenlady543 How are you doing?

I had a really bad migraine today. I’m on my last day of norethisterone but this time as per my consultant’s instructions, I’ve been on it for 3 weeks. Most of the time it’s been ok but today was awful as I get closer to my natural cycle length and period. I was not allowed to take any oestrogen so worried my oestrogen will be too low to have a good period. I have read that in perimenopause uterus lining thickens anyway. Is it right that a lot of norethisterone but hardly any oestrogen will affect my period and cause lining to remain thick?