Feels like I’m the only one who it didn’t work out for

[ThirdAidKit]

There are so many threads here where people have high risks and then good news.

I didn’t get good news despite it being only a 3% chance or whatever everyone says.

I had a TFMR and now I’m 38 and think that was my last chance.

I just want someone to do something. I don’t understand about IVF, I want to pay to make this better, can I just go to a clinic and they’ll do it?

I am no help really with practical stuff but just wanted to send a hug. I’ve had 3 embryo transfers in the last 12 months, all textbook on paper, and have had BFNs with all cycles. We have no more embryos frozen and can’t afford to do any more IVF. It’s not at all the same, but totally get the feeling of being the only one it’s not worked out for. It is lonely and shit and I’m sorry.

(All that being said, our first round of ivf resulted in our son, so definitely contact some clinics and ask about the process if you think that might be a route for you)

i’m really sorry for your loss. TFMR is such a painful situation.

I’m not sure what your question is - were you thinking of IVF with genetic testing? Do you have existing fertility problems and needing IVF?

If there is a particular known genetic condition which is carried by you or your partner then there is the option of pre-implantation genetic diagnosis for just that condition where they build a special test just to look for that problem in the embryo. Things like balanced translocations, Huntingdon’s, Cystic Fibrosis, BRCA. This can be done on the NHS, there are certain criteria and long waits.

Many IVF clinics will offer pre-implantation genetic screening. This looks at the chromosomes of the embryos, it doesn’t look for particular conditions but would aim to pick up conditions where the number of chromosomes were affected, many of these conditions are incompatible with life, they might pick up things like Edwards syndrome. This is not generally offered on the NHS.

Have you had any follow up or results following your very sad TFMR? It sounds like you would really benefit from a proper conversation with someone.

@Aspidistra1

Do they check for balanced translocations in the embryo? As these usually don't cause problems until the baby grows up and wants to have a baby unless I have misunderstood?

@AmericanStickInsect I mean they look for unbalanced translocations. But you can have PGD if you have a known balanced translocation. I think that’s right. All a bit confusing.

Thank you @Verbena87 for the hug, it really makes a difference. I hope you get some luck soon too.

Thank you @Aspidistra1 for replying, the hospital told us that the chance of any other genetic issues was only 2% higher than normal in any future pregnancies.

I have been thinking about the IVF route as it took a while to get pregnant the first time (no apparent reason) and I am very conscious time is running out. I don’t want to spend another year trying and then it not be possible. But I know nothing about it.

I guess I am looking for some sort of way to speed up getting pregnant again that probably doesn’t exist :(

We did ivf with PGD for lynch syndrome, so I do know a bit about that, but sounds like it’s not something you would need.

thanks for your kind words. X

You could always book an initial consultation with a clinic and talk through options.

It took quite a long time for me to get pregnant with DS1 but no diagnosed problems. We had IVF for DC2 as DS has a genetic condition. They quoted me a one in 3 chance of taking home a baby with one cycle, with odds increasing to 1 in 2 if we had a suitable embryo to transfer.

A cycle of IVF involves medication to stimulate the ovaries to produce lots of eggs at once, regular scans throughout this then sedation for the eggs to be collected. Your partner makes his contribution at the same time and then they mix the sperm and eggs and see in 3-5 days how many embryos you have, then arrange for embryos to be put back in. For a fresh cycle this would be straight away, so if you had one they’d transfer that (minor procedure, more like a smear test) and you carry on different medications and then do a test about 10 days later. If there are more they would be frozen. If that doesn’t work and there are more in the freezer you can wait for a new menstrual cycle, take medications and transfer another for as many embryos as you have. All of that is classed as one cycle. So the whole thing could take a few weeks or several months. A cycle of IVF is likely to cost several thousand.

When they consent you for IVF they do say there’s a slightly higher chance of congenital abnormalities (not much I don’t think, maybe 1 or 2%). It’s not really known whether that’s to do with the fact that people having IVF tend to be older and have conditions leading to them needing it or if it’s to do with the IVF itself.

So one cycle of IVF might give you a 30-50% chance of taking home a baby, slightly increased chance of congenital problems but not much, might cost 8-10k. Trying naturally would maybe give you a 25% chance of pregnancy each month. Roughly.

You could always start trying naturally when you feel ready and then also book an initial consultation with a clinic to talk through - they’d be more expert than me. It might cost you a £150 to a couple of hundred for an initial appointment depending on the clinic.

I understand how you feel. I feel statistics never work out in our favour. We have unexplained fertility. Our miracle baby had a severe heart defect caused by a chromosome deletion and we had a tfmr at 26 weeks. We have now went back to IVF. I feel like if there's a 1 in for something then we're it.
I would start by speaking to your GP. Push about your age and history. They can check bloods to see if you're ovulating and can discuss next steps re fertility clinics. Our GP also sent my husband to have his sperm checked. Normally after 35 they can do that if you've been trying for 6 months with no pregnancy.
We are with the NHS for IVF, so I'm unsure if you can contact clinics directly.
It's hard going in a way but we have had 3, almost 4 years of trying and at least with IVF I feel like there's a chance I might actually end up pregnant. I've mostly lost that hope regarding a natural conception.
IVF privately can be expensive, cost wise it adds up very quickly.

@ThirdAidKit sorry to hear about your TFMR. Maybe you can access a support group or even a thread on here in the pregnancy loss section.

If you're ready to try again why not do so while you investigate IVF? You might not need it but if you do you can find clinic open nights to find out more.

@Verbena87 if you don't mind me asking, was any of your IVF on the NHS? DH has Lynch syndrome and has had cancer already, we have frozen sperm but he didn't have chemo in the end.

@HitthefloorforTaintedLove yes you should be able to access IVF with PGD on the NHS. It is nationally funded and you should
get 3 full cycles (which is more than the two we would have got for infertility here). So long as both of your BMIs are under 30, female is under 40, neither of you smoke and no unaffected children from the relationship. Lynch Syndrome is already approved. If your DH is already under the genetics team then he can just contact them, otherwise ask your GP or his cancer team to refer you to genetics. It’s the local genetics team that need to refer you for the PGD.

@Kitkat247 I’m so sorry about your heartbreaking loss of your miracle baby.

@HitthefloorforTaintedLove yep, NHS funded - basically what @Aspidistra1 said. You get 3 cycles or 1 live birth, whichever comes first. We got 4 embryos to test from our first cycle which were amazingly all lynch free. Our first transfer gave us our son, then we paid to store then transfer the other 3 privately at the same clinic - no more funding as we already have a child from treatment.

Only thing to add would be that your BMI needs to be over 20, took me ages to gain the weight as I’m a scrawny distance runner. It’s quite a narrow bmi range for nhs funding.

Feel free to PM me if you want to chat a bit more. Xx

OP how are you getting on? Grief is bloody awful xxx

I had a TFMR. I was mid 30s at the time but was undergoing fertility investigation after not conceiving.

I did go on to get pregnant a little while later, she's now 9 so there is hope x

Thanks @Aspidistra1 for the IVF overview, really useful.

I’m sorry you feel the same @Kitkat247 , all the threads in here with “it’s only a 1 in 27 chance, 26 babies will be fine” I know are well meaning but just sting every time.

Thanks for your advice, I’ll go back to my GP.

I should have started by saying how sorry I am about your loss @Kitkat247

Thank you for your support @HitthefloorforTaintedLove

@Verbena87 I’m ok. I hadn’t thought about it as grief before. That has been a bit of a realisation.

@GuyFawkesDay a few people on here have told me similar stories. It really does help and give hope. It just feels so unlikely at the moment.

@ThirdAidKit I had a tfmr in November last year following an Edwards diagnosis. It was awful. The scan was awful, the appointments were awful, the process was awful and the recovery was fucking awful.

PP is right that this is a grieving process and it takes time, feelings are unpredictable and up and down and all over the place. I kept berating myself for still being sad or feeling like I wasn’t ‘back to normal’ - in reality this took several months and it wasn’t until the pregnancy due date passed that I really started to feel a bit more ready to move on.

Thinking of you and wishing you all the best with this.

Thank you @Spyke for your message.

You’ve summed it up very well there, and I’m so sorry you went through the same. This thread has made me realise I’ve not thought about it as grief, just been trying to move on like you say.

Its hard when you feel like your time is running out.

It really is a grieving process along with all that entails. I am slightly younger than you at 36 but empathise with the feeling of running out of time, it feels like every month is another nail in the coffin. I continued TTC and fell pregnant seven months after my tfmr, I’m now six weeks pregnant and finding it challenging mentally in terms of the worry that it would happen again or that something else will go wrong. In retrospect if I had got pregnant a lot sooner I likely wouldn’t have been mentally ready at all and would have struggled but it truly feels like there isn’t the choice to take a breath because I may only have X eggs left. It’s such a difficult position to be in and only you know what’s right for you x