IVF – things I wish I knew before starting the process
Okay guys, strap yourselves in… this is going to be a bit of a mammoth blog post!
Hindsight is a wonderful thing… I’ve learnt so much while going through infertility and IVF, and I’m actually quite shocked at how little I really knew about fertility, my own body, and how infertility tests and treatments work, before beginning this process.
After posting in an IVF support group on Facebook, it seems that a lot of people feel exactly the same! I asked for contributions detailing what people wish they knew before starting this process. Below is a summarised list with my input added… hopefully you find it helpful!
Things we wish we knew…
How long infertility investigations would take on the NHS.
The NHS is an invaluable service for us here in the UK, and one that I never want to disappear. I strongly believe that free healthcare should be available for everybody. Unfortunately, it is hugely underfunded and under-resourced, meaning that wait times can be extremely long in non-urgent cases. For us, the full investigations took two years to complete, only to then be told my diagnosis was ‘unexplained infertility’ – this is despite them knowing I have endometriosis. It was extremely frustrating and meant that I wasn’t valid for NHS IVF funding due to my age (more on that below).
If I had known how long it would take back when we started the investigation process, and the fact that I wouldn’t be eligible for funding, we probably would have started looking into private IVF treatment much sooner.
The NHS IVF funding postcode lottery…
NICE guidelines state that women who are aged under 40 and meet the criteria for in vitro fertilisation (IVF) should be offered three full cycles of IVF. In reality this doesn’t happen. Integrated Care Boards (ICB’s) around the UK are allowed to set funding decisions based on the clinical needs of their local population. This creates an unfair ‘postcode lottery’ system, for who is or isn’t eligible for IVF funding on the NHS.
In my area, you must be no older than 35, you and your partner must not have children from a previous relationship, only one cycle is funded, and it’s not funded for a full cycle. You can see your area’s access criteria here: https://www.gov.uk/government/publications/nhs-funded-ivf-in-england/nhs-funded-in-vitro-fertilisation-ivf-in-england, but I would also recommend checking out your local ICB’s website too, for full details on eligibility in your area.
If you aren’t eligible for NHS funding, IVF can be expensive.
When we found out that we weren’t eligible for funding, we started to look at private clinics in the UK to get an idea of what costs we might be looking at… we got a huge shock. Private IVF in the UK can be very expensive – most clinics we looked at started from around £9,000 in our area (the price in 2023/24), and that was without medication or the initial consultation.
This is so disappointing – as I have no idea how lots of people manage to afford to do one round of IVF privately, let alone multiple rounds. We were lucky in that we had some savings, however if we had gone ahead with IVF in the UK, that would have only covered one full round. Because of this, we started to look at clinics abroad – we were lucky enough to have two very good friends, one of whom used a clinic in Athens, and one who used a few clinics in Prague.
The clinic we ended up choosing in Prague cost £2,700 for a full round of IVF, and the medication was around £700 more on top of that. So, a total of £3,400 – much cheaper than any UK clinics we had looked at. The total cost including flights and accommodation for a three week stay, was just under £4,000, so still under half the cost of one round in the UK – and with a little break to Prague included!
The care we received was absolutely fantastic, I’d highly recommend checking out reputable clinics abroad. You can find lots of clinic suggestions if you take a look at the following Facebook groups – IVF abroad support network, IVF Support Prague, IVF in Greece (official). Just make sure you do your own research into each clinic and have (free) consultations with each clinic you are considering.
That the NHS only offers limited tests –
There are much more in-depth tests available for infertility, but the cost to have these done privately, especially in the UK, is expensive.
If you are eligible for NHS funding, keep an eye on your weight/BMI following referral.
I’ve heard of instances where a funding referral was accepted, and then treatment is put on hold if a patient loses, or gains weight, meaning they drop to below or above the required BMI.
BMI is a frustrating requirement in NHS funded IVF – you can be shorter with more muscle and have a higher BMI than someone who is taller, who weighs more. It’s something worth discussing with your fertility clinic anyway, even if you aren’t NHS funded, just in case it’s a consideration of starting treatment.
Knowing and understanding how to track your cycle/ovulation is key.
When we started trying to conceive, I was shocked at how little I knew about how my cycle works. Primary school taught us about periods and what they can feel like, but they didn’t go into to detail regarding how your cycle works, including the different phases you go through. We were also never told that egg quality and fertility can decline with age, it was always ‘if you have sex, you will get pregnant!’
I found out that although it’s possible to get pregnant at any point in your cycle, there was only a very small fertile window of five days before an egg is released from your ovary, and the day of ovulation. This fertile window is different for everyone and depends on how regular your periods are, and how long your cycle is. It can also vary slightly from month to month.
I personally used ovulation sticks and logged the first day of each period in the cycle tracking app, Flo, to try and figure out where in my cycle was the best time to try to conceive. Unfortunately, even after using these for three years, and having regular cycles and positive results on the ovulation test sticks, we still didn’t have any luck with me falling pregnant naturally. I still think it’s worth using these elements (perhaps not for three years!!), as it will inform you how your cycle works. This means that you will be able to answer any queries about your cycle from your IVF clinic with confidence.
That endometriosis can contribute to infertility, as well as affect egg quality, ovarian reserve and implantation.
I was diagnosed with endometriosis at age 22, after going back and forth to the GP with painful periods from the age of 16. I had two laparoscopy surgeries to remove endometriosis and ovarian cysts, but I was never told that these surgeries might affect my fertility. I was told that endometriosis can make it difficult to get pregnant, but no one explained why, or how to me. I only found out in 2024 that I have grade 3 endometriosis as well as mild adenomyosis, after going for a private MRI scan. I also found out that the surgeries I had when I was younger had likely damaged my left ovary and therefore affected my ovarian reserve as well.
There needs to be much more awareness and education around endometriosis, and how it can severely affect so many people. If you are suffering with endometriosis or adenomyosis, I’d recommend checking out the following websites:
More information and investigations should be done for male infertility.
A lot of the time, the focus is heavily weighted towards female infertility. I think the only tests my husband had done in the two years of investigations we had, were two basic semen analysis tests, a full blood count test, and STD tests. Compared to the multitude of tests I had to have done; it seems so basic!
If you suspect you may have more of an issue on the male side, in your situation, it’s worth trying to see a urologist who will be able to run more in-depth tests. Getting this looked into sooner could save a lot of delays, or failed rounds.
Advocate for yourself!
If you are told there isn’t a problem, or you feel like things aren’t being investigated properly, make sure you speak up as much as possible. It might feel uncomfortable in the moment, but honestly it can make such a difference to the result. It’s important to do your own research – don’t just accept or rely on what you are told.
I was already pretty good at doing this, as I had been doing it for my endometriosis, my mum’s cancer treatment, and my dad’s heart health appointments! The key thing is just to write a list of things you want to ask, or push back on if it comes up, and have it in front of you. Don’t by shy to get a good old list out!
Egg collection and embryo transfer hurts for some people.
I was lucky with mine, and didn’t feel any pain. For egg collection I was completely sedated with general anaesthetic and didn’t have a clue what was going on! My transfer was very straightforward, and I didn’t feel any pain at all. Unfortunately, this isn’t the case for everyone. Make sure you talk to your clinic about what anaesthetic and sedation options are available to you, before you have your egg collection or embryo transfer.
It can also vary each time you undergo an egg collection or transfer, too. This is worth bearing in mind just in case you feel like it could become a problem in future. Although I didn’t have any pain with egg collection, I did develop a very mild case of anaesthesia mumps afterwards! This is where the sides of your jaw, and near your ears can feel painful/sore, and some people get swelling too. Mine went down within a few days, after drinking lots of water!
Knowing that there’s a chance that no eggs will fertilise, or that they’ll fertilise but not make it to blastocyst stage.
I think one thing that isn’t stressed enough when it comes to IVF treatment, is that you can go through all of the scans and stimulation medications, but it doesn’t guarantee that you will actually get to transfer stage.
Because this isn’t generally explained very well, if at all, a lot of people tend to focus on the fact that they need to get to egg collection and then transfer, not expecting that everything could come to a halt before you even get to that point.
There’s numerous things that can happen in a cycle. Your round could be cancelled due to your body not responding properly to medications, something could be found on a scan or in a blood test that requires further investigations before proceeding, although follicles are showing up on the scan, you may not get any mature eggs (only mature eggs can be fertilised). Even if you do get to egg collection, there’s a chance that none of your eggs will fertilise. Even if they fertilise, there’s a chance that none of the embryos will make it to blastocyst stage. You could get through all of that, and then there could be problems at the transfer stage where they have issues getting the embryo past your cervix. A whole myriad of things can go sideways!
I don’t mean to sound negative, and I don’t want any of these things to put you off. I just think it’s important that people are made aware of what can happen at each stage of the process… something that is sadly lacking when it comes to IVF clinics informing patients.
In a similar vein… IVF doesn’t always work for everyone.
There seems to be a common misconception from people that don’t have fertility issues, that if there’s a problem, IVF will be the answer to giving you all the children you could ever wish for. Very sadly, this is not the case for everyone. Lots of people go through multiple rounds, and for whatever reason it’s unsuccessful.
This is a hard thing to swallow, and something you should briefly consider when starting the process (although try not to focus on that too heavily).
Lots of people also don’t understand that IVF isn’t just a last hope, or a last option, but a viable option that people can actively choose based on their personal circumstances.
In the UK, as soon as you have an embryo transfer, you are protected by the equality act for pregnancy and maternity discrimination.
This includes the two-week wait, and two weeks after a negative test. You continue to be protected if you get a positive test. You can read more about this on the ACAS website here: https://www.acas.org.uk/managing-your-employees-maternity-leave-and-pay/if-theyre-having-ivf-treatment
The time needed to take off work for appointments and treatment.
This was a little different for us, as we had our IVF treatment abroad which involved a longer period of leave. However, even before we got to that point, the number of appointments we needed to get various tests and scans done was immense. Make sure you speak to your doctors and fertility clinic to get an idea of how much time off might be needed for all these elements.
Remember that after treatment, if you feel that you will need some time off to rest and process everything, you are completely entitled to request that. You would need to speak to your workplace about how this leave can be taken – whether it’s fertility treatment leave, medical leave, annual leave, or unpaid.
When it comes to the two week wait, after an embryo transfer, pretty much every symptom could be a pregnancy symptom or a symptom of the medication.
You can Google all you like (and I have) but the only way you'll find out whether you are pregnant or not, is by doing the test. It’s best to try and wait until your official test day if you can, as the result will be much more accurate.
Talking about the process with family and friends can really help.
Obviously, this is a very personal decision – I’m a talker, and I’m usually very open with loved ones about things I am going through. For the first two years while we were undergoing investigations, we didn’t tell anyone about our struggles. I personally found this very difficult and felt like I was hiding things from my family and friends. My husband on the other hand preferred to keep quiet about things, until we fully knew what was going on.
Once we got to the point of getting a ‘diagnosis’… if you can call it that, of ‘unexplained infertility’, and started looking at clinics abroad, we decided that it was time to tell a select few family and friends. When we did this, I felt so much relief. The support we received from everyone was incredible, and I wish we’d considered telling everyone sooner. Part of the reason for us not telling anyone sooner, was that we were holding on to the fact that I might fall pregnant naturally while having investigations, and we could surprise everyone with a pregnancy announcement… ha!! Obviously, this didn’t happen, but oh my goodness were our family and friends our biggest champions through every stage of the treatment. I’ll forever be grateful to them for that.
Another bonus of letting people know, is that it stopped a lot of the annoying comments from various people such as ‘when are you having kids, you’re getting on a bit!’
I also opened up to my workplace and told them that I would be undergoing IVF treatment. I was very anxious about letting them know, but thankfully I needn’t have worried – they were extremely supportive. I would decide whether to let your work know depending on your own experience of how you think they might react. I would love to think that every workplace is as supportive as mine was, but sadly that isn’t the case.
Infertility and IVF can be an extremely tough and emotional process to go through. You see friends and family falling pregnant around you, which can hit hard when it’s something that you want to happen to you so badly. Talking through it with loved ones can help immensely, but if you don’t feel comfortable doing that, I’d recommend reaching out to some online support groups or the Fertility Network UK support line.
On the flip side… if you aren’t going through IVF, it can be hard for people to understand what you are going through.
People have the best intentions and try to be supportive, but unfortunately, they may sometimes say things that they don’t realise can be hurtful. Some of the (stupid… sorry, but they are) comments I received included things like:
You just need to relax
It will happen when you least expect it
My friend did X, Y & Z and managed to get pregnant!
Oh, my friend did IVF, and it didn’t work
My partner just needs to look and me and I fall pregnant
If it doesn’t work, you can just adopt! (FYI – there is no ‘just’ about adopting a child. It shouldn’t be considered a backup option, and there is a whole other complicated process involved!)
At least you’re going for IVF, that should work!
Maybe you’re just not meant to have kids
You can have one of mine!
Have you tried [insert various natural treatments/supplements here]
At least you have decent sleep/can go on holiday etc
It also might be hard for people to understand when you feel like your have to distance yourself from loved ones falling pregnant, or avoiding children’s birthday parties/events where there will be lots of children around.
I totally get how frustrating comments like these are. At first, I used to just laugh and kind of ignore it, but as time went on, I found myself almost challenging people that made comments like this to me. I’d recommend gently trying to educate people that comments like these are not okay or explain that you find them hurtful. Most people should understand, and if not, who needs someone like that in your life!
The lack of support available for men.
There are so many support groups and forums set up for women going through infertility, but there’s very little available for men going through the same thing. Two amazing websites I can recommend are https://testhim.com/support and https://www.himfertility.com/.
A lot of men don’t seem to open up as much as women do, so finding someone to talk to who is going through the same thing as you can be difficult. It’s worth also searching for support groups on Facebook, too.
The emotional aspect of how you thought getting pregnant would look.
I don’t know about you, but I’ve always thought that when I fell pregnant, I’d be able to surprise my husband with a cute little Liverpool FC outfit, announcing that he is going to be a dad. I dreamt of surprising my friends and family once the three month mark has passed. Infertility sadly robs you of these moments – IVF is a very planned, medical and risky procedure. You and your partner experience every step of the process together, with the two of you huddling together over a pregnancy test after the two week wait to see if it’s been successful or not.
The thing that helped us was celebrating small milestones with our loved ones, rather than doing the big reveal. For example, after egg collection, after transfer, doing a pregnancy test, getting to the 12-week scan, a gender reveal.
Although it’s not what you may have originally had in mind and thought about for years, moments like these can make the whole process really special.
That supplements can be very helpful for both men and women.
The book ‘It Starts with the Egg’ goes into supplements in excellent detail and explains the benefits of each one, as well as what it helps with. Supplements should be taken at least three months prior to starting IVF (or before a sperm analysis) to see the difference.
Phew, there we go! If you’ve made it to the end of this blog post, well done! When I started writing this, I didn’t realise what a huge post it would be, haha.
A big thanks to all that contributed with their points in the IVF support group on Facebook!