Pre-IVF limbo - anyone else?

[RebeccaNoodles]

Just that really. We're scheduled to have IVF in June. Been ttc for 14 months - which I know isn't that long (she says defensively) but I am nearly 39 and have endometriosis so I'm not getting hopes up. Especially with the stats for my age group.

Part of me feels like detaching from the whole thing - partly as a self-protective thing. I used to feel cheered up by the 'IVF working first time' stories but now they get me down as I don't want to let myself hope ... Agh.

If you met me in real life you would think I was quite cheerful!! Anyone else in a similar boat?! Dreading IVF yet also hoping against hope??

LH I love the idea of your eggs getting extra slutty underwear. I know a friend of mine who smoked copious amounts of weed said although his sperm count was fine, he reckoned his swimmers were probably so stoned they just went ‘sorry guys, I just can’t be buggered, it’s an awfully long way to go, think I’ll pass on this one’

ever PGS is pre-implantation genetic screening. It is genetic testing where they biopsy a blastocyst, taking a few cells from the outer bit, send them off for testing, and check which embryos have the right number of chromosomes. Most failed cycles and miscarriages are due to chromosomal abnormalities - the embryos were aneuploid or ‘incompetent’ i.e. they never had the potential to become a person. PGS looks at the whole range of chromosomes and allows you to identify which embryos are genetically normal, and which are duds, so that you can increase you chances of a live birth by only transferring a viable embryo

This is slightly different to PGD, which is pre-implantation genetic diagnosis, which is where the embryos are tested for very specific genetic diseases, used where one or both parents are carriers of specific genetic diseases, to avoid passing these on to their children.

The results of the PGS testing take a couple of weeks to come back, so the embryos are biopsied then frozen straight away, and then a ‘competent’ embryo is transferred in a FET

LH yes you can usually do it the following month. stealthbanana, who is on a couple of other threads, who is seeing my consultant for her IVF, did her retrieval cycle for PGS last month and is doing her FET this month

There is the possibility of some damage to the embryo, although this shouldn’t be too much of a concern in the hands of an experienced embryologist. The concern may be that where an embryo is mosaic, that something that is actually genetically normal might test as being abnormal, so a potentially ‘good’ one might be discarded

Dr Sher writes a lot about embryo banking with PGS for women with diminished ovarian reserve - i.e. doing several banking cycles, culturing the embryos to blast and biopsying them before freezing, and then batching them together for PGS testing once you have a decent number of blasts:

drgeoffreysherivf.com/embryo-bankingstockpiling-slows-the-biological-clock-and-offers-a-selective-alternative-to-ivf-egg-donation/

ever good luck with the FRER - we are all rooting for you!!

My consultant is an endo specialist and know he says how important it is to deal with the endo before doing IVF, so can imagine how frustrating the wait must have been - but hope when you POAS it will all be worth it!

MPP thanks lovely!!

Wow banana, your depth of knowledge is amazing, thank you. Is it a lot of money to get this done? And can this only be performed on a blastocyst, not a day 2 or 3 embryo do you know? Are you having these tests performed on your "sub bench" embryos from your last cycle?
Will have a look at Dr Sher article, looks interesting.
Thank you for the well wishes, absolutely terrified to the point of thinking I don't want to wreck mine or my family's Easter so may do it on Monday morning instead.
In the last few days I have had no sign of spotting, bleeding of any kind (not at all usual for me), my cycles usually revert to being short, and the spotting starts usually a week before I get a full blown bleed - I had period style cramps were only noticeable last weekend, so I have hope but the stats will tell me otherwise. And it could be the pessaries holding off major AF, but still my body has a mind of its own and usually would be seeing signs by now.

Its really worth knowing your Consultant is an endo Specialist. That said if this cycle fails I just have a feeling it will have either been a crap egg, or my thyroid levels were wrong.Only ever had endo on my left ovary, my womb has always been ok, so had less concern about implantation, but the amount of health obstacles I ve had still makes me worry about any aspect of this process.

I just collected a private prescription for double strength cyclogest (400mg x2 p/d), which I will use if I get a positive test. An eye watering £72 for a months supply. My GP is fab,I missed a trick there with getting that for free but alas the timing of easter hols has not helped me here. I figure if I need further treatment, I could use these in the interim if I try naturally as, or it might be useful for my pals on here if they wanted to self medicate or ran out etc.

Yeah everhopeful PGS is REALLY bloody expensive

It’s a fresh cycle plus the cost of the PGS (at my clinic it’s £2800 for up to 8 embryos, each additional embryo is something like £300 I think, can’t remember off the top of my head) plus the cost of embryo freezing plus the cost of a FET to transfer

So for me, based on the whacking great meds bills for my 2 cycles (£2k a pop each time), I’d be looking at around £13k for a Fresh+PGS+FET cycle

Unfortunately it’s not recommended to test our subs bench, as to do so we’d have to thaw them all, biopsy them, refreeze them, and then thaw for transfer. To freeze and thaw twice would be a tremendous strain for the embryos and very likely they might not survive a second thaw. So we've got 4 blasts there that we basically have to play lucky dip with. We could hit the jackpot and first one turns into a baby! Or we could go through 4 failed FET or miscarriages. If I'd had a BFN I don't think I'd be so precious about PGS, but being pregnant until 10 weeks and then finding out my baby had died just slayed me. I can't face going through that again if at all possible.

I believe it is possible to test day 3 embryos, but there’s not really much point for PGS. As you’re trying to find the euploid (chromosomally normal) ones, leaving to day 5 already self selects the stronger ones - not everything that makes it to blast will be chromosomally normal, but anything that DOESN’T make it to day 5 almost certainly wasn’t. So if you have a lot of embryos then you’d be paying a fortune to test ones that if you’d left them to culture, would have self selected themselves out

It’s only really worth doing PGS if you have enough blasts (Dr Sher recommends 4-8) which is why it may be worth embryo banking as per his recommendation, if you want to do PGS. With fewer than that, the risk that you’ve paid a load of money and ended up with nothing to transfer is greater.

Also I believe that at day 5 the potential of biopsying damaging the embryo is I think smaller - because a couple of cells from a really complex ‘too many cells to be able to count’ structure of a blast, I think may cause less potential damage to the embryo structure than taking one whole cell from an 8-cell structure. I could have that completely wrong however. Also, the biopsy of a blastocyst comes from a couple of cells from the trophectoderm - the outer bit of the blast, the bit that becomes placenta - not, crucially, the bit that becomes baby. Whereas presumably with the 8-cell day 3-er, it’s not distinguished what bits will become what!

I could have got myself mixed up on that last point though

Really really hoping that it’s a good sign that there’s no AF breaking through - your willpower is amazing!!

RE; the GP, yours is a good one if you can get your Cyclogest on the NHS, mine wouldn’t prescribe me either Cyclogest or Progynova as my treatment had been private, so said I needed to get the prescriptions privately from my clinic. At least I asked!!

Banana - wow that's eye watering expensive. I guess by doing this, you have really thrown everything at it, you could do no more. It just would have to work.

Actually you are probably right re private prescription, but my GP has been amazing in every other aspect. When I felt that my FC might cancel my cycle as she might not have been totally satisfied with thyroid result (based on T4 result not TSH - as that was bang on), she was on my side and held back the results. The previous month, my clinic said there wasn't time to get the drugs in before I would need to start,and that turned out to be bs because when I started the cycle, I literally got them delivered 2 days later. My GP has allowed me to have almost every blood test at my surgery and has rung me with the results, I haven't had to chase anything.

400mg cyclogest twice daily seems a lot tho, I may feel am overrun with oestrogen but I don't want to be tipping the other way. What dose were you on with both your luteal support/early pregnancy drugs?

Your GP sounds awesome!! I can't get anything from them because I'm not eligible for any NHS treatment or investigations as we haven't been TTC a year (and rushed to IVF because my FSH suggested I was in borderline premature ovarian failure and hurtling towards early menopause). So pleased your GP has been so helpful - makes such a difference.

I was on 400mg Cyclogest twice daily, plus because of my crappy lining 2mg progynova three times daily. I was told to continue the oestrogen tablets till 10 weeks and the progesterone until 12 weeks x

LHReturns... Might be worth adding DHEA to your supplement list, if it's appropriate for you..I had low ovarian reserve and poor egg quality.. At 1st IVF cycle (I was 42) only 3 eggs..1 fertilised but it looked odd as anything.. 3rd cycle, 9 months later.. 17 eggs, 12 fertilised, 5 blasts, 2 of which looked OK-ish and 1 looked perfect...

Thank you all so much. Yes I have got my DHEA (from DHEA.com where Banana gets hers), and my Coq10. Anything else that you believe I should get? I already take Omega 3 6 9. And folic acid have started too.

Tallamou thank you - both you and banana have achieved stonking results after supplements which I am desperate to emulate.

I am getting married in two months - will the DHEA give me any unattractive side effects do you think? Or is two months not enough time to develop adult acne and total hair loss

I had a moderate metamorphosis into Adrian Mole in terms of my hair got quite a bit greasier, my skin oilier, and I did notice a fair few more pimples fairly rapidly. However it also all vanished fairly rapidly, so I think if you were to try it and find the side effects were intolerable, you would have plenty of time to test the water before your wedding. Plenty of people don't seem to have any side effects - so I think it's a case of try it and see xx

Tallamou that's awesome - my second IVF cycle had almost exactly the same dramatic changes as you - first IVF was rubbish, second also got 17 eggs, 12 fertilised and 5 blasts. Good old DHEA!!

(LH I didn't get any thinning hair or facial hair BTW. The fine and downy hair on my forearms perhaps got slightly less fair and downy, but I swiftly attacked that with the epilator. Problem solved!)

LH might be worth getting your vitamin D levels checked. Low AMH can be linked to low vitamin D apparently; I've been taking absolutely mega doses of it, but get my levels checked every few months to check I'm not overdoing it (as unlike most vitamins where you'll pee out what you don't need, vit D is fat soluble).

I stopped taking my ridiculously high dose vitamin D after transfer and throughout my pregnancy, just taking the standard dose as part of my prenatal multivitamin - and my levels are currently low end of normal range (after being mid-high normal range). So for now I'm back on the horse pills!

I had ridiculously low levels of vitamin d (was off the scale apparently). Bananafish - did not realise that vit d was fat soluble. I was given these lemon liquid vials as a private prescription to get my levels up to therapeutic level
DHEA the only thing I found was my hair thinned and went quite greasy, but my skin was fantastic and had no other side effects.
I did take COQ10 (for 20 weeks) and DHEA (for 14 weeks) and have no way of telling if it improved my egg quality because it was my first IVF, I didn't get the same egg yield at all as Banana and Tallamou
But this evening I finally plucked up the courage to do the FRER and I have a BFP, so it could be that it self selected the quality eggs (only got 2) together with being battered by high dose stimms- I am so happy. Really did not expect to get this far on my first IVF especially as the Consultant said cancel it, but I know I have a bloody long way to go.

Woohoo!! Ever that is bloody fantastic - you obv had the golden (Easter) egg. Congratulations!! So very very pleased for you

OMG Everhopeful - that has made my Easter!!! Congratulations to you!!!

That's fantastic news, Ever! Massive congratulations to you :)

You are all very kind. Know that I'm 2 mins pregnant and have a hell of a distance to go.
We are all aspiring to move toward same goal, your support means so much and you totally have mine.
Hope your all having good holiday weekends, and are keeping out of the crap weather today. The weather was gorgeous here yesterday (Northampton) but know if wasn't everywhere else.

Everhopeful that's great news, hope you celebrated with a choc egg! Congrats and all fingers xd for the next stage. You've inspired me to keep downing the CoQ10. It really is great to know that IVF does work.

Banana I am so sorry about your mc . You really must feel like you are in limbo - I really hope you get some answers to your questions, and a plan in place, soon.

How is everyone else? I had a nice Easter weekend away visiting family, well mostly nice except that my mum has dementia. It's mild atm but she did have a wandering episode while we were there. The awful thing is, she's still very much aware that we are ttc and feels very sad for us ... It would be so nice to be able to give her some good news - though I know it's stupid to put that pressure on ourselves. Oh, and our flight back was cancelled and we came home to a flooded toilet. Aside from that it was very nice ...!!

Hi RebeccaNoodles. I most certainly did celebrate with a chocolate egg, thank you!! Yeah keep downing the CoQ10

That sounds rather an eventful Easter weekend for you

I was wondering is your endo monitored quite regularly? Mine has only really been on my left ovary (apart from some bladder scar tissue) and went dormant after surgery. Hopefully that wont be an obstacle for you,so many people are successful with IVF with endo

LHReturns
sorry for not replying sooner re DHEA, my dad had a health crisis and Ive been mostly in hospital since...
I didn't notice any ill effects from the DHEA...no hair loss and no acne...actually my skin was good...
Im really interested in the effects of mind-body techniques on IVF treatment..both experience and outcome...you say you have nothing to do until the summer and your next round...but I think there's a huge amount to be said for using that time to tell your body what to expect and also whats expected of it...
Everytime you pop a DHEA pill, just take a moment to give your ovaries an encouraging pep talk..tell them that this pill is to help them grow the best possible eggs they can and that when treatment starts they're to put the best ones forward.