PGS: After having my review appt, it’s... - Fertility Network UK

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PGS

Squeak2 profile image
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After having my review appt, it’s been recommended to do PGS after a short protocol and different stims (Highest dose meds). I’m at a loss to what to do as it’s such a difference in price and may not work 😞. The clinic we are at doesn’t do any kind of money back as it’s nhs and a set price for one try. It’s it worth checking out other clinics as I do quite like where Ive been going but it’s not really working out and the nice PGS nurse I spoke to on the phone reminded me that I’m “old” in terms of trying to get pregnant as I’m 42 this year and my eggs have a higher risk of abnormalities. Basically I felt she was telling me to do PGS and almost backing me into a corner when it’s nearly twice the price!! Oh and when I asked about DHEA, i was told there is no proof it works!! Has anyone any thoughts?? Thanks 💕 xx

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18 Replies
KateBrian profile image
KateBrian

Hi Squeak - have you read the advice from the HFEA about PGS? There is a traffic light system for all the different add ons including PGS and it's worth having a look. See here - hfea.gov.uk/treatments/expl...

Squeak2 profile image
Squeak2 in reply toKateBrian

It certainly was worth reading! Im now rather annoyed at the nurse I spoke to who said us older women should have it done, when in fact the article doesn’t really recommend it for woman over 37 as it risks causing damage to the embryo and also could be misdiagnosed as a embryo not being healthy when in fact it could be! Oh man, totally confused now!! Thank you for making me aware of the HFEA page! xx

anna0908 profile image
anna0908

How many blastocysts did you get from previous cycles? We discussed pgs with our consultant after 2 failed cycles but we concluded that we get so few embryos to transfer that it wouldn't benefit us. We also didn't want them to refuse to transfer an embryo that showed some imperfection but could have been our baby (e.g. downs). Our consultant said it helps some women make a decision to move on to donor eggs if all come out chromosomally abnormal, but we had decided it was the last go with our eggs anyway. So think it really depends on your individual situation. If you tend to get at least 3 good blastocysts it might help to pick the right one, or save an inevitable failed transfer? Or maybe they will let you decide once you know if you are likely to get a few to blastocyst? Hope that helps xx

Squeak2 profile image
Squeak2 in reply toanna0908

Hi anna0908, We originally had 17 eggs which ended up as 9 blastocysts and the best 2 transferred. This worked until somewhere around 9/10 weeks and I had a D & C just before Christmas as nothing was coming away. The other blastocysts weren’t good enough to freeze. The second time we had 7 eggs and 5blastocysts of which I had the best 2transferred without any joy. Again none were good enough to freeze but I’ve since realised our clinic being nhs is either very fussy or just doesn’t like to freeze things! That and we are likely on the border line of our embryos being good enough 😞. So I’m just not sure what to do next 🤔. Thanks for replying xx

anna0908 profile image
anna0908 in reply toSqueak2

With such great numbers, I would say pgs is worth considering. Blastocysts that are not good enough to freeze can be good enough to make a baby! Might help in selecting the right ones and reduce your chance of miscarriage. It's just so frustrating that all these extras come at such great cost! Xxx

Squeak2 profile image
Squeak2 in reply toanna0908

The problem literally is how much it costs as it could double the price... 😢 It’s hard to afford everything and to know what’s best. The HFEA link isn’t overly promising in its research into PGS either so it’s almost a case of what can I do to make it better which was why I had hoped DHEA might be worth trying?! xx

anna0908 profile image
anna0908 in reply toSqueak2

My clinic put me off dhea as said there wasn't much evidence of increased live birth rates (but did increase egg numbers). I think the problem with so many things in infertility is that they just haven't been tested in large enough studies to know what is truely effective. But on an individual level people have seemed to have success with non proven techniques. We went down the nk testing route and steroids plus infusion (again unproven!) But then had a really poor cycle and only produced 1 egg with my poor ovarian reserve! I then fell pregnant naturally within a couple of months and can't help wondering if the drugs for that cycle had helped it happen. Can't believe how much we have paid/borrowed/been helped out by family over the years. It is such crazy money. Could you pay for a 1 off private clinic appointment to get a 2nd opinion? I know it's more money but our consultant was so good at discussing everything in depth including evidence and we never felt pushed in to doing things. Really trusted their judgement and felt we made the best choices for us. Xx

Squeak2 profile image
Squeak2 in reply toanna0908

Well unfortunately we won’t ever have the chance of natural conception due to my OH having laser treatment years ago to blast cysts he had in his testes, too much scar tissue and that’s why we went for icsi. It’s just infuriating as to what might be the right thing to do is all. Thanks for your help xx

anna0908 profile image
anna0908 in reply toSqueak2

Good luck. Hope you find the right path xx

Cinderella5 profile image
Cinderella5

Well I cant offer any advice on the PGS side of things but I definitely believe in DHEA. It didnt get me a BFP but I had better quality blastocysts and a girl that I know who tried it after a poor cycle has just had twins. My clinic weren't for or against it when I first cycled but at the end of it they started suggesting it to patients. However I did get told that at my age 39, the likelyhood of success with my OE was only 5% as the number of chromosomally normal eggs Im producing is less as I age ( thanks for stating the obvious Dr!!) .....that is the only reason I can think for the PGS suggestion. Best of luck with what you decide, its a lot of money to put out with no guarantees!xx

Squeak2 profile image
Squeak2 in reply toCinderella5

Hi Cinderella5, it’s not fun when our docs and nurses state the obvious... some of us didn’t meet our OH’s until we were a little older anyway but are made to feel we shouldn’t have waited! I’m not sure I would want to be connected to any exes, although they weren’t all bad!! Do you know of a reasonable place to buy DHEA? I think that’s sounding like my best bet and to go from there?! I’m still not sure if it’s worth doing all this here again either 😕I hate making big decisions! Thanks for replying 💕 xx

Cinderella5 profile image
Cinderella5 in reply toSqueak2

Exactly, it really annoys me that people make out that we've waited until we're too old, like it was a choice! Arrghhh! I'll PM you with where I got mine from. Its not the micronised stuff which is meant to be the best....3x25mg spaced out the day!xx

I think I would be tempted to look for another clinic Hun. I'm feeling angry about the way the nurse spoke to you! We need support when going through IVF & of course to be told about exploring different options but not made to feel under pressure & backed into a corner. I wish you all the best with your journey but please do what you feel is 100% right for you. Like you, I'm older at 41 & didn't want any regrets so done what my heart was telling me. Xx

7AVA profile image
7AVA

Hi Squeak2 - we were going to do PGS screening on our last round. I did a LOT of research (just on the internet) about it and came to the conclusion that it was worth it for us. It sounds like we are in similar position as I am 42 and it was our second cycle. We had got 11 eggs with first cycle & transferred one blastocyst and did a frozen cycle with another blastocyst (both unsuccessful). Fast forward to second cycle and we got 6 eggs, 4 fertilised. By day 3, 2 were looking good and 2 not so good. By day 5 all were blastocysts but only 2 looked good enough to freeze. We decided that it wasn’t worth the expense of PGS as we wanted to transfer both and give them a chance. Also the risk of damage by biopsy was too great with only 2 embryos. With our clinic, we paid the money upfront for the PGS, at the beginning of the cycle, but could cancel and ask for a refund if we changed our mind. That’s what we did. Unfortunately, the 2 blasts resulted in a bfn. I don’t regret transferring both but the only thing I’d say is that although the clinic keeps saying that the bfns are due to the quality of my eggs because of my age, I don’t know that for sure and PGS screening might have helped to determine if that is true. Wow, long post - feel free to ask me anything else you’d like to on it - I’m no expert though!! Xx

jenny34 profile image
jenny34 in reply to7AVA

Am so sorry to hear the next cycle did not work out. Sending love xxx

7AVA profile image
7AVA in reply tojenny34

Thanks Jenny xxx

jenny34 profile image
jenny34

Hi! I’m sorry to hear about your dilemma. There are so many difficult decisions to make aren’t there!

We were having consultation appointments to try for our 2nd miracle baby and the consultant made us feel very pressured to have PGS too. We had 3 frosties to use. His reasoning was that it would be cheaper in the long run, as we would only need to do one ET to get the BFP, that we would save ourselves the trauma of BFN and possible miscarriage. However, doing my own research at the time, I read that embryos that PGS has deemed not viable can self-correct and go on to create chromosomally normal babies. I also checked the HFEA site for criteria for PGS and it didn’t apply to us at all, which made me angry because the consultant was clearly pushing us towards this. I was also scared PGS would deem all 3 frosties not viable, and of course there is the small chance of damage to the embryos. So, in the end we chose not to do PGS, had the best frostie transferred and she is now our 2nd daughter, 9 months old. She is perfectly happy and healthy (ie, no chromosomal issues).

Obviously that’s just my experience and everyone’s situation is different. As others have said, I would think about your past cycle and whether or not you got plenty of embryos. It sounds as if the clinic are going to make you decide before you have the cycle whether to do PGS – is this ethical? Because obviously what happens with your embryos will influence whether you lean towards PGS or not.

Good luck whatever you decide to do; interesting to read everyone’s thoughts on this.

xxx

Scarlett13 profile image
Scarlett13

Hi squeak, have you made any decisions? I recommend DHEA (micronised). It may be what improved my egg quality from round one to two, and although I’m 37, one of my consultants says he recommends it for over 40s xx

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