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Infertility

Our Infertility Support forum is a space to connect with others in the same position, discuss causes, treatment and IVF, and share infertility stories of hope and success.

Have to stop trying before IVF - what would you do?

9 replies

ivf2019 · 03/12/2018 12:53

Hi all,

Just after a bit of advice as our IVF paperwork arrived the other day and I'm feeling very emotional about it all.

Bit of background:
I have a balanced translocation and a 50% risk of passing on the unbalanced version to any babies. Chromsomes involved mean any unbalanced pregnancy would be very unlikely to make it to term and even less likely to survive post birth. Most likely outcome would be early miscarriage but we have already decided we would test any natural pregnancy that made it far enough to test.

Because of this we're eligible for 3 rounds of IVF with PGD on the NHS (incredibly thankful for this) and have been referred to Guy's from our local hospital ~200 miles away. I have concerns about communication as I've read lots of terrible experiences from others, but was reassured by the Guy's GC that things were improving so we are prepared to see how it goes for our first cycle and then potentially transfer to another clinic if it is truly terrible.

We have been TTC naturally for 20 months with not so much as a sniff of a BFP. Unsure if this is to do with the translocation or just bad luck or potentially other issues. Other than a sperm test for DH we have had no fertility investigations as are terrified that we might be accused of seeking IVF for fertility reasons rather than genetic ones and might have the funding pulled. DH's sperm test was okay but not great - good count but low-ish motility and morphology. GP felt natural conception (based on sperm test) still likely.

Friend went through a TFMR last year and it really hit home that that could be us if we were to conceive naturally, hence deciding to request the referral for PGD, but agreed to continue trying naturally in the meantime and just accept that risk.

So where we are now:
We've had our first appointment with Guy's (genetics) and the first consent form has arrived to confirm that we want to go ahead, which is great. BUT. We have to sign to confirm that we are not TTC and that we are using robust contraception in the meantime. The idea of going back on the pill just breaks my heart. I think part of me thought it would happen naturally while we were waiting.

With the PGD they sometimes have to build probes specifically tailored to the couple and there is obviously a cost involved in this, and if you conceive naturally you might have to pay any costs already incurred back. I totally get this, the NHS is not made of money. For us though, they have confirmed in writing that no work-up is needed because commercially available standard probes can be used. So as far as I can see, there is no cost involved until our first appointment at the ACU? In which case I can't see why I need to be on the pill until that first appointment, which will most likely be around March if we send the forms back immediately. So that's 3-4 more months of TTC that we would miss out on.

I really don't know what to do and would love some advice - would you:

  • get back on the pill, return the forms straight away and just wait
  • delay returning the forms for another month or so (we have 3 months to return them) just in case, and then go back on the pill when you return them
  • return the forms now but stay TTC until just before the next appointment (I'm not sure how I feel about this ethically but I really, really, really want to delay the pill if I can)

Sorry for the mega long message and ramble. I'm finding this very stressful and just don't know what to do. Thanks all xx

OP posts:
dolly92x · 03/12/2018 13:01

Hi, hope you are well, you have a lot to think about don’t you Hun, so I got told 4years ago my tubes are completely blocked and I would never conceive without IVF, started feeling poorly the other week, went to docs.. POSITIVE pregnancy test, (don’t get me wrong, I’m in the process of miscarriage, which is very unfortunate) but I actually got pregnant myself, without any help, & I feel the reason for this is because I gave up trying I gave up thinking it will never happen so who cares! Honestly I am a firm believer of the ‘not TTC method. Sorry just wanted to send you what happened before you jump into everything! You have to decide yourself whatever makes you feel more comfortable hun. Your body your life. Hope you make the right choice for you xx

minipie · 03/12/2018 13:05

I would try to speak to someone at the clinic. Explain your position, that there wouldn’t be costs incurred, and ask if you are allowed to TTC while waiting given this.

I wouldn’t do option C (sign forms but go ahead and TTC while waiting anyway). There may be other medical reasons why they want you not to TTC and to be on the pill that you don’t know of.

Plus, if you went that route you would to tell them eventually if you do need IVF, as they would need to know how long you’d been off the pill, and then you have pissed off your IVF clinic at the outset - not a good place to be.

Be open and hopefully you will get some flexibility, if there is no reason in your case not to TTC. (You may need to ask to be passed to someone quite senior who has the authority to say ok).

Best of luck.

Switcherpoo · 03/12/2018 13:38

Just use condoms, no need for the pill. 3-4 cycles missed is not many in the grand scheme of things. We ttc for 5 yrs before IVF. We used condoms during ivf cycles. Thankfully IVF worked for us 2nd time round.

barbarabarnacle · 03/12/2018 13:46

Even if you decide not to continue trying, I'd strongly discourage going back on the pill or using any form of hormonal contraception. If you go ahead with IVF, you want your body to be as ready for a pregnancy as possible and artificial hormones just interefere with that.

glasshalfsomething · 03/12/2018 13:48

Exactly what @barbarabarnacle said. Don't push the additional hormones in to your body if you can avoid it.

ivf2019 · 03/12/2018 13:48

Thanks everyone.

@dolly92x sorry for your loss but thank you for sharing your story x

@minipie that's a great idea, thank you. I'll give them a call and see. I really don't want to lie and agree it's not a good idea to annoy them this early on.

@switcherpoo they recommend the pill as I have to be on it ahead of treatment anyway but yes we could just use condoms until then. So pleased it worked for you second time, and so sorry that it took so long to get there. I bet your little one is very loved.
It'd obviously be too soon to be doing IVF if we were doing it solely for fertility reasons, and I know 3-4 cycles isn't a long time to miss but going back onto contraception feels like a massive backwards step and I'm struggling to make that jump in my mind.

OP posts:
YetAnotherThing · 03/12/2018 13:54

Commercial probes don’t mean no cost involved. They would have to be bought. What the clinic probably mean is that they don’t have to be customised for you, so costs reduced. I would suggest speaking to clinic (maybe specialist nurse) to find out more behind whole logic. Even standard IVF requires contraception whilst doing it.

ivf2019 · 03/12/2018 13:55

Cross post, sorry!

Thank you @barbarabarnacle and @glasshalfsomething . I completely agree, I had an absolute nightmare coming off the pill and really am not looking forward to hormonal contraception again but the clinic recommend it.
I'm still getting to grips with all the IVF terminology but whatever it's called they time your cycles using the pill so I would have to be on it ahead of first stimming cycle and then again before transfer (which could be several months later as they freeze any embryos while they do the genetic testing on biopsied cells). I think that's why they recommend the pill from the outset but I'm going to query it.

OP posts:
ivf2019 · 03/12/2018 15:09

Thank you @yetanotherthing you're absolutely right - there is cost involved in purchasing them but they can be used for anyone having IVF with PGD for a translocation. I will speak to them though.

Thanks again all for the sound practical advice and head wobble. Finding this all incredibly daunting and quite difficult.

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