7 things no one tells you about IVF (and what to do about them)

Lots of pills and needles

YOU'VE WARNED YOUR PARTNER ABOUT RAGING HORMONES. You’ve been on a training course to deal with your needle phobia. You’ve read every single article on this website (whoop!). You’ve saved up all your annual leave from work. You’ve bought a container ship’s worth of folic acid. And you’ve stopped smoking, drinking and stressing out (ha!).

Congratulations: you still have absolutely no idea what you’re in for.

That’s not to say the reality is worse than you expect (my own experience was often better than I imagined): it’s just to serve as a warning that the process may well play out differently from what you imagine.

Below are some of the surprises that cropped up for me during IVF. You’ll no doubt experience a few of them yourself, but you’re bound to have a few new ones of your own, too. Your best bet is to go with the flow and deal with what comes your way – without worrying about what could happen in the future.

1: You’ll soon be able to add “stellar organisational skills” to your CV

Your drug-taking schedule will be INSANE from the get-go – and it’s unlikely to get any simpler until you’re about 12 weeks pregnant.

To give you an idea, here’s what I was doing every day for about 12 weeks after my embryo transfer:

Morning:

  • x1 Fragmin injection
  • x1 Lubion injection
  • x1 Aspirin pill taken orally
  • x1 Progynova pill taken orally
  • x1 Progynova pill taken vaginally
  • x1 Cyclogest suppository taken rectally

Afternoon:

  • x1 Progynova pill taken orally

Evening:

  • x1 Lubion injection
  • x1 Progynova pill taken orally
  • x1 Progynova pill taken vaginally
  • x1 Cyclogest suppository taken rectally

Every other day:

  • x1 Evorel patch placed on thigh

Glossary:

  • Cyclogest: contains progesterone, to help maintain a thick uterus lining
  • Progynova: contains oestradiol, to help maintain a thick uterus lining
  • Evorel: yet more oestradiol
  • Lubion: yet more progesterone
  • Fragmin: contains heparin, which is a blood thinner (i.e. prevents clotting) and has been shown to increase the chance of a successful embryo transfer – possibly because it improves blood flow
  • Aspirin: another blood thinner

And that’s only one particular stage of the process! You’ll be expected to take different combinations of pills and injections throughout – and those combinations will change frequently, depending on how your body is responding to everything.

My advice on how to deal with it all:

  • Set multiple named alarms on your phone (and don’t forget to change them when medication is added, removed or adjusted) to remind yourself when to take everything.
  • Make your partner aware of your medication schedule too – and ideally get them involved. My husband was the Chief Injectioner in our household, and he loved nothing more than stabbing me in the stomach every day with a bunch of scary-looking needles. It was a surprisingly good bonding experience, and (OK this is super weird) I actually kinda miss it.

Another reason you could now apply to become the Queen’s PA? All those appointments for scans and blood tests. During the stimulation phase of IVF, you’ll be expected to be flexible, accommodating and organised so that you can attend, say, a scan the following afternoon.

But I promise: you’ll soon get used to it and think nothing of it. (Also: having a dedicated IVF planner/journal will help.)

Click here for information about ALL your IVF medication: how it works, when you take it, how you take it, and other drugs available (opens in a new tab). 

2a: Message board threads are best ignored – for your own sanity and wellbeing

Both before and during IVF treatment, I spent a LOT of time scouring various IVF message boards. I discovered that, for the most part, everyone is exceptionally kind, understanding, thoughtful and supportive – and that surprised me. I’d assumed I’d come across plenty of passive-aggressiveness, one-upmanship and downright rudeness, but there was barely any of it.

BUT… if you want to use the “They don’t call each other ‘Hitler’ or ‘nincompoop’, and therefore this messageboard is helpful” argument, use it on someone other than me. Here’s why:

  • You know the saying “Worrying means you suffer twice”? That’s not always true. Sometimes you suffer just once: when you’re reading a bunch of threads about the horrendous side effects people get from their treatment, panicking about the fact that you couldn’t possibly cope with blurred vision, splitting headaches or hyperstimulated ovaries, and then never actually experiencing those (or indeed any) problems. And even if you do get the side effects, what can you do about it? Absolutely nothing. And you’ll get through it all fine anyway.

    Think it’s better to “at least be prepared for what could happen”? Trust me on this: it’s not. You’re going to have a lot to think about, a lot to plan and a lot of medication to get to grips with – in addition to maintaining a regular, normalish life – and the last thing you need is an extra thing to think about or be prepared for. Just go with the flow, and take it as it comes.
  • Did you start to get a weird pain in your foot when you began injecting stimulating drugs into your tummy? I didn’t, but I randomly googled that particular body part together with a fertility drug called Menopur to see if anyone had ever asked questions that connected the two. Sure enough, people have written on message boards about their Menopur-related foot pain.

    Here’s the thing: someone will have the exact same symptoms and issues as you. But that shouldn’t make you feel better about the situation: either the symptom/issue is just a coincidence and totally unrelated to your treatment, or it’s so serious that you need medical treatment rather than reassurance that someone in Swansea is going through the same thing.  
  • When someone writes “Arrrrgh I forgot to take my injection last night! What should I do?” it’s difficult for fellow IVFers to write something as honest but unhelpful as “Urrr dunno… call your doctor?” Instead, they’ll often say stuff like, “I think it’s fine if you just double your dose tomorrow”, or “I did that once and my doctor said not to worry if you miss the odd injection.” This is the kind of thing you need to ask YOUR doctor about, rather than rely on advice given to you (or given to someone else who had the same question back in 2009) from a fellow layperson.

2b: But… finding friends who are going through similar experiences is a GREAT idea

While I think message boards are about as useful as an empty follicle, I do think there's a place for apps and websites that allow us to make friends with fellow IVFers. IVF can be incredibly lonely – especially when everyone else you know is having babies the old-fashioned way while making ill-judged comments about your lack of bump.

In the past, it's been hard to find such friends. No one even looks at each other – let alone talks – in clinic waiting rooms, and IVF forums and Facebook groups seem to be more about advice (and judgement) than empathy and deep understanding.

Thankfully, that seems to be changing: there's at least one app that helps women connect with others who are trying to conceive. It's called Peanut, and it gives women who are “fertility challenged” (my words) a chance to connect and befriend others who are going through similar experiences.

The great thing about Peanut is that it allows you to have personal, one-on-one conversations with other users via the app. What's more, “proximity” is baked into the algorithm, so you'll start by seeing profiles of people who live nearby.

Peanut is fairly new to the “TTC community” (it began life as an app for new mothers looking to find friends), but it's already thriving. If you're interested, you can check it out here. (It's free.)

3: You’re allowed to ask the doctor questions

If you’re getting your treatment on the NHS, you’ll no doubt be feeling all sorts of gratitude and relief when you hear about the prices that private patients have to pay.

I was SO grateful and SO aware of how stretched the medical staff seemed that I’d allow myself to be rushed out the doctor’s office before I was ready. I wanted to be the easygoing, laid-back person who they’d think upon as “the dream patient” for years to come. (I remember feeling ridiculously proud when a doctor praised how motionless I could be when she was using the “dildocam” – and how quickly I could put my trousers back on afterwards – because it meant she could catch up a bit on the day’s delays.)

But despite my thankfulness for the NHS and pride in my own abilities to remain still while a massive stick dug around my insides, I often felt like I didn’t get a chance to ask questions or voice my concerns.

I have no idea if those questions or concerns could have prevented some of the setbacks and medical issues I ended up encountering (OHSS probably being the worst), but that’s not the point. The point is that I should have felt comfortable asking about what was happening to me, and checking they definitely knew about my medical history and treatment up to that point. (Remember: you won’t see the same doctor each time you have a scan or appointment – and those multiple doctors often don’t have a chance to read through all your notes before they call you into the room.)

So please… ask questions. Ask them if they’re sure about the treatment they’re recommending. Ask “What if…”, “When does…” and “How will I…” as much as you want.

And if it feels like the dildocam is about to tear open your vagina, say “Ow”.

Ow speech bubble

4: You’re allowed to get printouts of test results

You’ll be having lots of blood tests throughout the process – and sometimes you might want a copy of the results.

For example, at one point I was having regular appointments with a fertility-specialising acupuncturist (it didn’t work, btw), and she wanted to see what my thyroid levels were like – in case a cause of my infertility was something the doctors hadn’t picked up on.

I told her I didn’t have any of my blood test results, so she said, “That’s fine: next time you go in for a scan, ask them to print out all the blood tests you’ve had so far.” I asked, “You can DO that???” She replied, “Errr, yeah. It’s information about your body, after all.”

So I asked, and they printed (once they’d located a printer cartridge and some spare paper).

(You might like to transfer the details from your blood test results into a dedicated IVF planner/journal.)

5: If you’re having NHS treatment… be prepared for the 1990s-ness of it all

Almost everything is done on paper. They’ll mark the growth of your follicles on some graph paper with a pen. They’ll write up your notes on paper. And your paper notes will be placed inside your own personal cardboard folder that’s bloomin’ easy for doctors to mislay. (I speak from experience.)

They’ll also arrange your next appointment on a piece of paper that goes inside an “appointments” ring binder for the entire department. If you’re trying to book your next scan with a nurse but the ring binder is inside the locked office of someone who’s gone out for lunch, heaven help you.

Calendar

All I can suggest are a couple of things I didn’t do but wish I had:

  • Keep your own set of results, hormone levels, information and instructions in a dedicated planner/journal. (Alternatively, ask if you can take photos of all your notes – and continue to take new photos when they write new notes.) If they lose the paper version, you’ll have a proper record of what’s been written about your treatment up to that point. (I often had to explain what I could remember instead, which wasn’t ideal.) 
  • Appointments usually are transferred from a piece of paper to some sort of intranet-y scheduling system. But to make sure they definitely have your appointment in the system, call up the day before to check.

Long protocol, short protocol, fresh and frozen embryo transfer: free sample calendars

Colour-coded, beautiful, and super easy to follow! The calendars will give you an idea of what your own treatment will be like, and they'll help make the entire process easier to grasp.

You'll also get a free download called Know your IVF medication, to make sense of all the drugs mentioned in the calendars.

I won't send you spam. Unsubscribe at any time.

6: If you’re having NHS treatment… buy a three-month (or yearly) prescription prepayment

This will save you an absolute fortune. Wonderfully, you can do it online (although blimey… is that the best URL they could come up with?): https://apps.nhsbsa.nhs.uk/ppcwebsales/patient.do

7: The embryo transfer process is bloody weird

The weirdness will start when you drink more water than a drowning camel but aren’t allowed to pee. Then you’ll get taken into theatre and scanned through your tummy, where a nurse will tut and tell you that your bladder still isn’t full enough. So you’ll go back into the waiting room and load up on vending machine tea out of styrofoam cups, before waddling back to theatre while complaining about the disgustingness of UHT milk.

The nurse will tut some more but say she thinks your bladder is full enough now. “You THINK it’s full enough now???” you say to yourself while grabbing onto your nether regions and bouncing on the spot like a three-year-old.

Around the same time that all this is going on, you’ll be shown a teeny tiny test tube and asked to confirm that the names written on it are those of you and your partner. “Holy fuuu… I mean… whoa…. there’s a potential human in there,” you’ll accidentally say out loud, reminding yourself once again about the strangeness of this entire occasion.  

After that, you’ll remove the bottom half of your clothing and be given a blanket to protect absolutely no modesty whatsoever, because… well, you’ll see.

You’ll lie on a couch and have your feet guided into stirrups, and then a TON of other people will enter the room from some sort of secret entrance. You don’t know who they are or what they’re there for, but they give the impression that they’re doctors rather than teenagers playing a particularly engrossing round of Pokemon Go.

All of a sudden, your couch will tip you backwards by about 45 degrees and the entire room will be able to see your pubes. The blanket will kind of hang out above your knees, keeping your thighs warm.

Legs in stirrups. Yes: I commissioned an illustration of a woman with her legs in the air.

I haven’t mentioned what your partner is doing all this time. He’s been plonked in a chair right next to one of your thighs. He doesn’t quite know where to look, but he’s pretty sure it shouldn’t be at your vag – so he attempts to look interested in his fingernails instead.

Then it’s finally time for for the embryo transfer! They’ll vacuum out your vagina (really), before loading the embryo onto a small catheter and inserting it into your uterus via your cervix. Ten minutes later, you’ll be allowed to wee and go home.

Effing strange.  

Long protocol, short protocol, fresh and frozen embryo transfer: free sample calendars

Colour-coded, beautiful, and super easy to follow! The calendars will give you an idea of what your own treatment will be like, and they'll help make the entire process easier to grasp.

You'll also get a free download called Know your IVF medication, to make sense of all the drugs mentioned in the calendars.

I won't send you spam. Unsubscribe at any time.