IVF - funding declined...

[Dot457]

Hi all. Wondered if anyone had been in a similar position and could offer advise please? We had a cycle of IVF back in March on the NHS. We live in Leeds/Wakefield area (UK) and are only entitled to one round, despite the NICE guidelines saying everyone is entitled to 3 (don't get me started on that) unfortunately we only got 4 eggs, and only one fertilised without abnormalities. We had an early miscarriage and once we had got our heads around this we got in touch with our local MP and she advised us to write to the CCG to ask for an individual funding request. This was about 2 months ago now and we have been informed tonight that we have been declined for extra funding or any kind of funding. I have numerous fertility problems, will never conceive naturally and I have basically been told that it's a now or never type situation. Getting really stressed out now on how we're supposed to afford IVF without getting our selfs in debt? We both have decent jobs and have mortgages and cars, but obviously around the 10k mark isn't easy to come by and have no choice but to pay for something that isn't in our control?! Me and my partner are always happy to pay our way in life but a bit of help financially with this kind of thing would obviously help the stress levels on top of an already stressful time. I really am at my whitts end and would really appreciate any kind of advice? Thanks in advance xx

Ask family to contribute and go private?
Go fund me?
Adoption?

Hi @Dot457 - just wanted to send a message of support. DH and I had four cycles of IVF (two of which were NHS-funded, which we will be eternally grateful for, we did the other two abroad) so we had a long, expensive battle to finally fall (and stay) pregnant. It's gruelling, and I found the expense to be an additional pressure - I felt terribly guilty when the paid-for cycles failed, on top of the sadness and disappointment, because we'd essentially wasted thousands of pounds of hard-earned savings and then of course there's the fear factor - how far do you go? How many times do you try? How much debt should you get into?

I think your best chance at this point is to get a loan, then either go abroad (you can do IVF in places like Prague for around £3k a cycle) or look at egg-sharing. This may not be suitable for you, as you don't produce a lot of eggs, but if the option was there to increase stims you'll be able to have IVF at a significantly reduced cost by giving half your eggs to another couple.

Egg-sharing is an emotional minefield and not something to be entered into lightly (even if it is possible for you somehow) as you may be devastated if you don't fall pregnant but the woman you donated your eggs to does (and you'll have the right to find that out).

Whatever you do, stay on the infertility boards here - contrary to how it appears on parts of this thread, normally you will get lots of support and advice!

Is moving house an option? We specifically chose our location and house based on knowing we would need fertility treatment. We chose an area which offers 3 rounds on nhs and we bought a house with a 5% deposit and put the rest into the bank to use for private IVF/ use to remortgage in a few years if we get pregnant!
I sympathise with your situation infertility is shit

I think endo can cause egg quality issues.
As you had low fertilisation rates.
We had 7 eggs of which only 1 fertilised (despite pcos).
Due to so many eggs growing they also triggered me too early on round 2. And got like 4 eggs.
Not sure if the low fertilisation we had was pcos or dp very pow count.

But even by round 3 when more fertilised they were mainly growing at a slower rate.
I had uneven stim doses not sure if that would have caused an issue.

With pcos and young you likely wont need much stim so it would be cheaper than for many others.
Have they checked your thyroid levels as you need around 1 for fertility. And can increase miscarriage risks.
With pcos weight loss (if needed) could improve success rates.
However one round i was trying to be really good with sugar levels and that round i only grew 4 altogether with the stims so it had to be cancelled.
The reason nhs needs to help is many cases are not straightforward so you could end up with so many rounds.
I do agree with a PP though that in general (obv not this situation) everyone needs to aim to ttc younger. Probably around 27. I was nearly 30 add 9m ttc then some investigations, quickly discovered several issues and referred but another 9m wait. I was nearly 33 when dc was born so almost 3y rather than 9m. Dc2 was 2y till birth despite paying privately. It's all just so slow.
However most of my friends had dc in those 3 years 30-35etc with no issues at all so it worked out for them.

I think the Ireland solution of tax back sounds good.
2-3 rounds is what is needed at least as you then have a reasonable chance. And those grumbling need to consider how much is spent on their kids education 4k a child per year for like 14yrs. If you have no dc vs some people with 2+ i think balance can allow a few funded ivfs.

IVF is never guaranteed but not much is in life.

Given that you will now have to fund it privately there are some really good suggestions here- clinics abroad with cheaper packages, renting out a room on air Bnb, cheap bank loans, remortgaging. If it were me I would think its worth the try but I would also think about what your next step would be if it doesn't work, whether you are prepared to fund another round or whether you are going to go for the one round and that's it, just so you are prepared for every outcome.

If there's medical reasons for infertility ie you are under 35 and unable to conceive naturally, there's discretionary funds often plus a handful of charities. But seeing your issues listed I would consider investigating other ways of having a family, two more rounds even is still a long shot to conceive

Agree that there should be a hard and fast rule on IVF- it makes no sense for some areas to get more rounds/different rules etc, as it's actually great that the NHS offers it in the first place but the upshot is that people who don't get the 3 rounds feel short-changed.

Good luck on your journey. I’m in Ireland and there is no option but to go private. We have spent €€€€€’s with no happy outcome. I just wanted to echo others that whether it is free or paid for it doesn’t mean you’ll have a baby at the end. That may sound harsh but it is the reality. Hopefully you’ll have a positive outcome.

To answer your question, we used savings, had no holidays, luxuries etc. We borrowed for the final round. It is very hard as we both earn decent wages but friends/family couldn’t understand why we would decline social invitations. Not sure how much it costs in the UK but it is average €5k for a straightforward IVF in Ireland. I do consider the UK to be very lucky to even get 1 round free, it’s privileged and I do feel (not from your post) but from posts on MN that it is taken as an entitlement in the UK.

Good luck with it and I hope you do have a baby some day.

Thanks everyone for your comments. Appreciate the advice. I clearly worded my original post terribly as I've had a lot of negative backlash which I think is really unnecessary.

@WhizzingFizzbee - Thanks for that. I'm fully aware of sacrifices that need to be made. I was just wondering how other people got there, on their journey, I know it's not something that happens over night. Not expecting the NHS to give me anything thanks, I was wondering if there was anything else out there that I might not have had knowledge on that could have helped us make a decision on what road we go down next. No need to be negative towards me. Enjoy the rest of your day

@Dot457 you are always going to get negative backlash on this kind of topic unfortunately! But there is a lot of good advice amongst the answers too.

@fancytiles - You are 100% right there! When I get chance I'm going to read all the friendly, constructive advice and make sure I respond to those as I really do appreciate it. I've written threads before and not had many replies at all so I really didnt expect this. I've already looked into some of the suggested ones so even though theres been some un kind people here, there could be someones comment that may have changed my future and for that I am thankful to all xx

I do think that infertility threads shouldn't be shown in active, in the same way adoption threads aren't.

I totally agree. Maybe worth asking if they can do that on site stuff?

honestly you will never regret having a child

You can't guarantee that. I read a massive thread recently full of people regretting having their children, in an I-love-my-child-but-if-I-could-go-back-in-time-I-wouldn't-have-had-them kind of way. You can't know how you'll feel until it's too late to change anything about it.

Good luck, OP. The unfairness is rubbish. It'd be far better to have a blanket policy than one rule for some, another for others.

The problem with this and why the op feels aggrieved is the postcode lottery. None, 1 or 3 rounds should be available for everyone. It shouldn't be a case of where you live determines what you get. We all pay our tax on a national level.

That said op, it is what it is. Feeling bitter and upset about it won't change anything - although by all means set up a petition to end the postcode lottery.

You have had some great advice about going abroad. If I were in your position I would do my research and go to the clinic with the highest success rates (even if more expensive). Borrow the money if you have to and do it sooner rather than later as you are still young which gives you more opportunities. Best of luck, I hope that baby comes soon for you.