ERA EMMA ALICE testing thread 8

[Gardenlady543]

@2021ivfagain @kerrym87 @Janefx40 @seven201 @thislittlebird @Spin101 @Enfys23
@CailinInUK @BewilderedBee @Loz2467 @Lori2022 @VenusStarr @clhiu @Faithhopelove83 @APSR @ChickenT2b @Mina209 @IVF22 @Lizzybeth1988 @AM08 @Fluffykins33 @Sar1010

Continued in from thread 7 :)

@ChickenT2b is there a two cycle non refund package for less? How long do you have to do the cycles in, because I started in 2020 and I'm still going with the first cycle, so if mine had a time limit I would time out before completion, I think my time limit is 5 years but I think the refund packages are often 2 or 3 years, sounds like a long time but I've had 6 month gaps inbetween transfers for tests and surgery etc, unpredictably. The reason I'm still going is because I got 9 embryos from my first collection, so I've transferred 6 and have 1 left, one hadn't survived the thaw for biopsy and the other was the 1 aneuploid. So I get another FET for the last one and another collection if this doesn't work out. So I'm still on cycle number 1.

@Gardenlady543 wow you really are getting your money’s worth, what a good decision that was. Yes there is a two cycle package for less. I guess I am planning for the worst, hoping for the best. Having a two cycle package is fine if you get lots of embryos. But what if I don’t 🤷🏻‍♀️. It’s such an unknown. The care package is over 3 years, maybe we don’t need 3 cycles in that time 🤦🏻‍♀️ guess I’m worried I’ll have no eggs or something. AMH is good though, DH sperm plentiful but morphology low so we’re doing ICSI.

@Gardenlady543 doing:
*ema/Alice
*karyotype for both
*SA
*PRP (1800 alone)

• one cycle own eggs ICSI *donor cycle 6 eggs ICSI *1FET (if any) *storage of any embryos *anaesthetic fees *all bloods and scans needed

All this would be 26k not including drugs 🤯 I have ME and each cycle I need at least 4 weeks off work, have lots of side effects both during and after, effects wear off finally about 4 months after. I've had over 3 months off in last 16, but working in a baby unit is just slowly tearing away at me despite being so rewarding. Part of me is reluctant to spend so much when it may not work as my fsh is creeping up and last cycle we got less mature eggs that fertilised properly and again from 14 eggs got 1 blast only which both failed to implant. But its a different approach which may just work. I'm swinging between continuing and donor but it's so physically hard; my egg quality isn't going to get better when it's shit to start with. Then I think we would get much better odds and probably success much quicker (clinic said as much) and I would still love a baby from donor egg but it's still a minefield . We're not sure what to do as we don't have proper estimate yet but we don't have 26k lying around. I'd rather have as much of the funds ready as possible rather than doing a bit then having to stop and start but mught have to work it out as we go. I know its something we have to work out with each other but there's so much to it!

@kerrym87 can you sign up for any packages? This seems really expensive. How much are the cycles, would going abroad be cheaper, I can recommend a clinic in Prague, they are very big on donor eggs.

What if you did the semen test (they do a dna fragmentation test), Karyotype and menstrual microbiome test through Fertilysis instead, would that reduce the costs much?

@ChickenT2b it may be something to consider financially if it is a lot cheaper, as you have a short period of time to find a lot of money now and I'm not sure of the value of these refund packages. Like I get the concept, you get some of the money you spend back if you don't get a baby, but I'm not sure it would mean much to me to have that. I have spend a huge amount, I think probably around £200k, I didn't have the money I had to remortgage my home and just as I earned it I spent it.

@Gardenlady543 I’m sorry for the delayed reply. I’ve had a lot going on at home and work and the negative test although expected still hits you like a ton of bricks!

Im so glad your tests and getting darker and your HCG is heading in the right direction!

I rang my clinic yesterday to register my negative test. It’s a whole month until my review appointment which I usually wouldn’t be too bothered but we go on holiday soon but the main reason is a I don’t want my periods returning after my down Reg because it will flare everything back up! I’ve asked for a note to be sent to her to see if I can have a prostap in the meantime that I’m waiting to speak to her.

Im thinking it’s the area impinging on my lining causing the issues, maybe it is taking bloody supply hence why my periods have been lighter for the last 18 months or so. Or even longer to be honest. My lining last cycle was 8.4mm on day 10 or 11 of my estrogen so even though it’s technically getting “thick enough” it might be affecting blood supply.

Im not going to be able to fit another transfer in now before holiday and the wait for my review so I’m tempted to use my private healthcare and go and get the lap. I was in touch with someone else who had brown spotting before her period since a miscarriage like myself and her lap ended up lasting 3 hours because there was so much endo.

Also dr Lessey in the US who founded the receptiva DX test has a video talking about the down Reg and a lap and he said if someone has painful periods, pain with sex or pre menstrual bleeding he goes straight to lap. I don’t have the first 2 of the issues but definitely the last.

Sorry for the long post I just needed to vent it out and see what makes sense. It feels so alone. All your own research etc.

If my consultant was available sooner I’d ask for another prostap and another FET before my holiday with the immunes you listed and doxy etc. Thank you so much for taking your time to send me that as it’s really helpful. Xx

Sorry just to update my clinic have just called, it was one of the nurses. They’ve agreed to give me another prostap on my withdrawal bleed so I’m down regulated whilst waiting for my review consult. So I can either do 1/2 more down regs and see if we can fit in another FET before hols and I ask them to add the immunes. Or I get the lap and have a down Reg and go on holiday and an FET when I’m back?

@Loz2467 I never had a positive pregnancy test until my chemical in December and now this positive.

There are three reasons for why I have potentially tested positive after so long:

1. The fibroid that was there since my initial fertility tests was removed. Most specialists would say this is the most likely based on the evidence base. Fibroids disrupt the lining and have an impact on receptivity.
2. The modified natural cycle, these worked better for me than medicated (but then why didn't I implant naturally, there is no issue with my husbands sperm, I always detected ovulation and I create very good blasts)
3. The immune protocol

Tell me about the fibroid you have again, it's submucosal right? I would get that out. I was told by Mr Trew who is an Ashermans specialist that removing the 2 fibroids I had (2cm and 1cm) was the thing that would make the most difference to my chance of success. I had my surgery under Dr Alan Fathing, he is the royal families surgeon and likely the best gynecological surgeon in the UK, but if your fibroid is small you will likely need open surgery as when they put fluid in your uterus during hysteroscopy it will disappear. I was in hospital for 4 nights and needed to wait 3 months before I could have a transfer. Definitely get the lap as well I'd say. I wouldn't implant any more embryos until you have had surgery if I were you, I wasted 4 embryos before my surgery.

@Gardenlady543 thank you so so much! I feel so lost! :(

I do know what you mean - why keep wasting my embryos.

so the fibroid could also be a patch of adenomyosis. Which can’t be removed because it doesn’t have an encapsulated like a fibroid apparently. It’s like on my lining. So on the scan when measuring the lining and looking at the quality etc it’s not there. When they move the probe it crops up. Like you said when I’ve had the hyterscopy because it was only 4mm at that time it likely hasn’t been seen! Whereas now it’s 1cm. 2 consultants have said I can’t have it removed because it will cause more damage to my lining so the down Reg is a better option to try and shrink it and reduce the blood supply to it.

Thats interesting about the surgeons. I’m based in Manchester. I’m wondering if to get my private Refferal done and go and get a scan with an endo and fibroid specialist and go from there? So I have another opinion.

I feel drained. Working 80 hours a week. Constantly researching and wondering what’s the best move it make next.

@Loz2467 well if there is a lack of clarity over whether the lesion is a fibroid and two specialists have advised not to attempt surgery, then that seems like it's been adequately explored.

My understanding is adenomyosis should respond to down reg which you are on.

I would definitely prioritise the lap though, if they can cut out any endometrial lesions then alongside your downreg that should give you a good chance moving forward.

80 hours a week!! Why are you doing so many working hours, that's something you need to optimise, you can't have all this treatment while working so much.

@Gardenlady543 I’m just panicked incase this is us over because of that area which they are saying can’t be removed? I almost feel helpless. If you know what I mean? Then I think about the time and investment and money when they’ve known about it all along? It’s so strange how it shows up on scans and seems like it’s been caused from my MC more than likely. I did have a natural birth with my loss so I got induced but then manual placenta removal? Potentially that could have damaged it. I don’t really know.

I should go for the lap then have a down Reg - gonna be hot hot on my holiday!!! Then ask for immunes and the doxy? Maybe blood thinner to all as a precaution?

It’s frustrating waiting so long for reviews and next steps. I know it’s sometimes a “break” but I wanna crack on.

I work in my full time job and setting up my own business but something has to give soon. I was staying here for the Mat pay and benefits etc but it isn’t worth the stress etc. I’d be over the moon if I ever got pregnant let alone be worried about money etc.

@Loz2467 adenomyosis doesn't develop at points of trauma does it? I thought it's similar to endometriosis but the lesions are within the muscle of the uterus. Essentially either it is adenomyosis or it is something else that can be removed surgically, if you think the latter then I'm not sure what you can do to explore it, presumedly you have already had a hysteroscopy/HSG or saline scan?

If I were you I would do that yes: lap, downreg, FET with immune meds and clexane.

@Gardenlady543 I’m unsure about points of trauma but I do know inflammation and a break in the uterine lining can cause it. I remember the first thing the nurse said at my first scan at the fertility clinic was “have you had a c section” as that’s common to get adenomyosis after but I haven’t. I’ve had natural births.

I’ve only had a hystereoscopy done and like you said the area is small so he obviously couldn’t see it inside the cavity. They described it a few weeks ago as “on the margin”. But I’ve read that anything touching the lining can stop implantation. I’ve never had a HSG, never had my tubes checked either. He just said they “looked open” on my hyst which I know isn’t that useful.

I’ll just feel lost for options if all that fails If they are saying they can’t remove it.

@Gardenlady543 I think we just can't decide what to do as it's so new, packages are an option if we continue with my eggs, I think after a chat with nursing team I'm probably going to book ema/Alice, get bloods and hubby's bloods and SA and go from there

@Loz2467 is there an adenomyosis expert you could see through your private medical insurance that could do a lap and explore if you need further investigations and advise on treatment? I don't know what's best in this situation either, but the route I would take is to find a Uk expert in the condition and get them to assess my case, that's what I did with Ashermans, the fibroid surgery and my hypothyroidism.

@kerrym87 can you put making a decision on hold and do those tests then, as that gives you some time to think, the EMMA ALICE will likely take a month and that's at the point where you are ready for a biopsy.

I had my consultation with my RI today and likely need a full day of immune treatment on Thursday but can't put any plans in place as he wants to see the beta increase and medichecks haven't even run the sample that I took yesterday yet. I really wish there was somewhere I could go to get a same day result, the waiting is so stressful!

@Gardenlady543 How are you getting on? When is your first scan?

The saga continues on my side…
I got an unexpected call from Tommy’s yesterday inviting me for a 3d scan. Expected to be told what I know already (endometriomas, endometriosis). However, I was told my left tube is blocked. I thought ok no problem as I’m doing IVF soon. But it’s hydrosalpinx meaning the toxic fluid can get back into my uterus, preventing implantation and causing miscarriage.

So seems like ivf is officially on pause and I’ve just booked a consultation with Dr Afifi in Birmingham to discuss surgery options.

Has anyone else had hydrosalpinx? Seems like a likely cause of my chemical last month.

It really is relentless at times..!

I’m also wondering how this might skew my results from fertilysis which remain pending. Surely if there is toxic fluid in my uterus, this would show up in the results. And then I won’t know if I need medication or just the tube sorting. 🤷🏻‍♀️🤦🏻‍♀️

@ChickenT2b it's great that they picked up this diagnosis, a hydrosalpinx releases fluid. A embryo needs a really dry environment to adhere to the uterine wall in order to implant. Yours did implant but it looks like pregnancy loss can be more likely with the diagnosis. What tests did you get through fertilysis?

My betas have been

8dp5dt (13dpo) 94.1
10dp5dt (15 dpo) 152

Doubling time 69 hours
48 hour increase 61.5%

14dp5dt 477

Doubling time 58 hours
48 hour increase 77%

I did a urine test on 16dp5dt but stopped the betas now.

It varies with what people say is acceptable when it comes to the hcg increase. Ideally a 48 hour doubling time. However most places say 48-72 hours is acceptable and bare minimum acceptable 48 hour increase is 60% and above.

My clinic booked me in for a scan at 6 weeks but Dr Gorgy said 6+3 so I have booked one a week on Saturday. My biggest worry is a blighted ovum

Sorry my clinic booked me in at 8 weeks. I'm having IvIg and LIT today.

@Gardenlady543 you’re in range then which is great. I hope the next week passes quickly for you.

You’re right it is good to get the diagnosis I guess, especially before embarking on the IVF journey which would have been destined to fail.
I got the RPL package which includes full immunology and the full microbiome testing.

Probably another week until the results come through. Just hope the fluid doesn’t confuse diagnosis.

@ChickenT2b I don't see how the hydrosalpinx would affect them. It's looking at your immune system. It's like my fibroid surgery, all my tests were done before that but we can't keep repeating.

@Gardenlady543 your levels seem to be growing at good pace although appreciate there are different views on the matter and everything is a concern in this delicate phase after so much disappointment. What day will your first scan be in that case? Isn't a blighted ovum caused by problems with the chromosomes, in which case yours shouldn't be as it's euploid?

DH and I have covid. I can't believe he's gone and caught it when nobody else is anymore. I'm now getting myself down because I read the one thing that covid infection seems to affect of all areas of fertility is eggs and embryos quality, like I really don't need that on top of everything else, my eggs are crap enough as it is. Some clinics even advise waiting at least 3 months after infection to try, anybody heard of that? Have my appointment with the PRC clinic next Thursday and if I'm still testing positive on Monday I'm gonna have to reschedule it. Other than that I'm gonna have to tell them, does anybody know whether it's likely to affect the tests I'll be able to have with them? Will they tell me I have to go back in a few weeks time? I don't want to waste £350 on a consultation plus the trip to Epsom if they won't do any testing on the day because of this, but I also don't want to wait weeks more to explore this path. Any advice anybody has on this and covid would be greatly appreciated.

Oh no @clhiu that is the absolute last thing you need, can you call up the clinic and ask, I think it will be best for you to know from the start if your tests might be affected and how long you might need to wait.

I saw that blighted ovums can be caused by chromosome issues. There are cases in euploid embryos people have posted online and people say this is because of microdeletions the PGT A misses. I think my scan will be at 6+3 but everyone keeps calculating my dates wrong. It's booked for a week on Saturday. My clinic booked me in for 8 weeks but Dr Gorgy said I should have it earlier for the treatment plan.

@clhiu after I caught covid despite wearing masks last year during my ivf cycle it messed up my cycle more than the ivf usually did, and there is some evidence of it causing disruption and inflammation with body systems including Reproductive. However, it doesn't affect everyone the same, I was quite symptomatic for weeks, hubby wasn't too bad. T did torch my eggs as I caught covud during stims and they didn't fertilise or divide properly at all

@ChickenT2b oh no. I hope they are able to sort out the issue.

@Gardenlady543 Blighted ovum can occur but beta tests vary. I’m pleased I never had my beta tested when I was pregnant. I think it can cause anxiety. When you have your first scan, things will get easier.

@clhiu I’m sorry you have caught covid. I have known lots of people still getting it. In fact, I will carry on wearing my mask when I go to CRGH and ask staff to wear them. I’m sorry though as it’s bad timing. Covid did affect mine and my husband’s fertility but we did a cycle later and it was better. I would say give yourself a couple of months. You are fortunate to have a good reserve. You could take supplements like ubiquinol, ask about dhea and wheatgrass to support egg quality. Have you thought about doing a mild stimulation cycle next time? With your amh and fsh, you could just focus on quality. It’s just a thought.

I’m still waiting for my swab results and my symptoms have improved a lot. I saw a difference since taking Flora femme with canesbalance and also lakcid intima. However, I did my swab when I might have had some symptoms.

Does anyone feel that lubion or cyclogest increased their vaginal ph? I just know that when I take norethisterone the vaginal ph increases, but I take canesbalance which suppresses it.

How do you take the cyclogest @2021ivfagain I only use it rectally, I feel like the it's better to put as little as possible on the vagina. I think hormones can have an impact on the pH, I haven't tested my pH since the start of throw cycle. I'm still using daily vaginal probiotics. It's great that you've noticed some improvement in symptoms.