Trying…to see infertility as a disease
This is a bit of weird one today but I’ve been wanting to write it for a while.
I have met people who want children or want another child but then say they can’t go through with IVF. Or couldn’t when it was their time.
Of course I respect personal decisions and I don’t know all of the reasons why someone wouldn’t go through with it.
But in the midst of trying to be open about how tough the infertility road is, I also wanted to make sure I said something else: IVF is a medical treatment that affects everyone differently, but can also be manageable.
I remember being told it was time for us to explore it, my husband and I, in 2017. I felt like it was “the end”. We had failed. IVF, the little I knew about it, sounded absolutely terrifying. Needles, pills and lots and lots of drugs. It seemed so unbelievably dramatic to both of us.
Unlike when I have been told of other medical treatments I need - I felt an immediate fear and like it was awful that our trying for a baby had led to this utterly disastrous option.
Now I have done seven rounds, I wanted to share my hope that at some point IVF could seem less scary and laced with shame and fear, and more like a medical treatment which may cure the problem - like the response to any disease. But also like any other medicine, may not.
I also seemed to forget that like any other medical process that there would be a doctor involved at every stage. For some reason, I envisioned myself, alone in my bathroom, playing doctor.
Now don’t get me wrong, During IVF, there are many, many times you are alone in your bathroom shoving all sorts into your body via a number of different routes - but only after appointments with doctors and nurses, explanations and sometimes extra phone calls should you need.
Today’s newsletter is not intended to gloss over how IVF can physically make women feel. For instance, round 4 of my treatment, when we experimented with a longer cycle, is one of most unwell I have felt in terms of a reaction to a single drug. After 10 days, it was done; the round sadly failed and we never tried that medicine for me again.
Nor am I seeking to minimise some of the other more pernicious side effects of the drugs women can experience, such as memory loss or feeling like you are seeing the world behind a glaze.
But again, the round is a matter of days, it happens gradually. Then it’s done, while you wait to see if it worked. And perversely that’s the point IVF patients often say is the worst part of the process; when IVF is actually hopefully finished and the embryo has been transferred into the woman and the dreaded two week wait is upon them before a pregnancy test. (Again please do not think I am not ignoring or seeking to minimise the earth-shattering experience of those who do not get an embryo during a round. I promise I am not). The emotional battle versus the drugs regimen. Yes you might still be on some heavy drugs during the waiting period, (I always have been) but the toughest bit is usually the psychological bit where you wait, hope and pray that all of your hard work and money has worked.
Because what the really terrifying thing is about facing infertility and struggling to have a child, is how that reality emotionally affects you and your partner, if you have one. The rollercoaster you have boarded whether you go for assisted conception medicine or not is the truly scary and destabilising thing - and you have already paid for a ticket whether you realised it or not.
IVF, IUI or other forms of fertility medicine could be your exit pass from such an unpleasant ride and should be viewed as such - and if at all possible - as a positive option. Or at least an option - if it’s open to you.
Again I am not seeking to minimise problems with patchy NHS IVF provision, certain IVF clinics offering false hope through expensive untested add-on treatments and the struggle to finance these costly courses of drugs. But I do think it’s important for society to move to a place where we see infertility as a disease. Not some weird lifestyle choice. The World Health Organisation defines infertility as thus: “Infertility is a disease of the male or female reproductive system defined by the failure to achieve a pregnancy after 12 months or more of regular unprotected sex.” It is worth remembering.
I am also writing this piece today because this week the stark findings of a survey hit the headlines. (And no, I don’t love the word “subfertile” either if you do click on any of these articles). The results painted a shocking picture of how far-reaching the trauma of infertility is. Yes, the respondents to the Fertility Network were undergoing fertility treatment but the data pertained to their headspace, relationships, finances and careers and it was heartbreaking to read:
- the vast majority said they felt sad, frustrated and worried often, or all of the time
- one in 10 patients experienced suicidal thoughts
- four in 10 respondents - 98 per cent of whom were women - said they had experienced suicidal feelings
- almost a third said they had experienced such thoughts sometimes or occasionally, while 10 per cent had them “often or all the time”
These feelings are not induced by IVF medicine. Although I don’t deny you feel rougher and not yourself when on the meds. They are about how facing infertility makes you feel.
Today I wanted to clearly distinguish between the two. And, if I may, say to anyone who is too scared to try IVF but has been medically advised to, can afford it, has the support of a partner or friends and family, and crucially still wants to have a child, please don’t forget it’s medicine. And there are doctors to help you do it.
It’s a gradual process that you take day by day.
It might not work but it also might.
And many women carry on their lives as before as best they can - holding down jobs and commitments. Albeit against a new backdrop. And sometimes they can’t but often it’s because of the emotional side of things - not the medicine.
Remember you would be a patient like you are in any other medical setting.
So if we can bring IVF and fertility medicine down off this scary pedestal that other medical treatments are not usually on, and consider its merits fairly and start viewing infertility as a disease, it would be a good, far healthier thing all round.
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This is really interesting. And I agree - I think it speaks to how deeply we’ve internalised an idea that fertility is our personal responsibility, as women. Because that’s the messaging we receive, constantly. (It’s our age, it’s our weight, it’s our stress levels, it’s what we eat, on and on...) It keeps infertility - and also recurrent miscarriage, in my experience - from being seen as a more neutral medical matter like any other. What’s more, it lets societies off the hook in terms of how compelled they feel to support those going through fertility treatment - or fund it in the first place.
As a lesbian (who had tried self-insemination at home then insemination via a clinic, plus three surgeries for dermoid cysts and endo), when I arrived at IVF I was excited and hopeful. I guess I knew from the outset that I couldn’t get pregnant within my relationship but needed external help, if just from a male acquaintance at first. So ivf didn’t feel like a blow.
At my clinic the retrieval and transfer were done while I was awake so it wasn’t a huge medical procedure that I needed a long recovery from.
I didn’t find the drugs affected me particularly badly - I want to say that so that women don’t feel they’re inevitably in for a rough ride.
I was very very lucky. The stats said 7% chance of a live baby at my age and I got him second go - he’s a very beautiful young adult now. My attempts for a second - four more cycles - were unsuccessful and even now so many years later I’m reading your articles with interest, as infertility leaves deep scars.