Will I Ever Know Why I React So Badly To The Pill?

I was sitting still on the sofa but everything around me was moving. I couldn’t make it stop. It was like being stuck in an elevator which was plunging down in free fall, on a loop. Except the elevator was my brain. I’d been stuck on a mental rollercoaster I couldn’t get off for weeks and, having never had a panic attack before, I’d initially thought I was having a stroke and been taken to A&E by a friend who struggled to conceal her alarm as I asked why I couldn’t feel my feet and became convinced that I was going to die. 

This was the autumn of 2011. To understand how I ended up here, paralysed with fear on the sofa in my rented flat, we need to go back four weeks before these panic attacks began, to a busy sexual health clinic in east London. I had gone because, after years of trial and error of what I like to call "contraceptive pill roulette", I’d begun a new relationship and realised that, at 23 years old, the prospect of an unwanted and untimely pregnancy was worse than the risk of feeling a bit "bad, sad and mad" on the pill. 

I have a history of migraine with aura, which as the nurse that day told me means it’s not advisable for me to take the combined pill. I have also suffered with incredibly heavy periods (also known as menorrhagia, for which I am prescribed mefenamic acid) so a non-hormonal coil has never been an option because of its potential to make your monthly bleed heavier. So there I was. My options reduced, the progestogen-only pill (POP) was all that was left. As I would discover later, it’s likely what sent my mental health into such a serious spiral that, confused and unable to cope, I found myself experiencing suicidal thoughts. 

The debilitating panic attacks, depression and suicidal thoughts which brought everything to a head went on for somewhere between six and eight months. I can’t be sure because my brain has only partially recorded that year of my life; I can’t replay the tape because it fizzes and cuts out. Huge chunks of memory are missing, lost to an endless whir of worry and panic. 

During that lost period, I know that I went to see my GP several times. I was referred for cognitive behavioural therapy (CBT), prescribed antidepressants and a high dose of beta blockers (which are used to treat anxiety). I was told I likely had generalised anxiety disorder (GAD) and, initially, I didn’t question it. 

At no point during these doctor's appointments was I asked about my contraception. This is despite the fact that there is a known link between hormonal contraceptives and "mood changes" aka anxiety and depression. It’s no secret and yet stories like mine, where this problem is not directly addressed, are all too common. 

Late one night towards the end of 2011, I sat at my laptop unable to sleep because of a panic attack that wouldn’t end. Was this it, I wondered? Had my brain broken? Would it ever repair or would I live the rest of my life stuck in a feedback loop of sheer terror and anxiety? The CBT wasn’t working. My fears and feelings weren’t rational; it was impossible for me to pragmatically or logically try to overcome them. I was doing everything right but nothing helped. I looked in the mirror and saw someone completely different from the person I had been before. 

In that moment it dawned on me that this crisis had begun shortly after I started taking the progestogen-only pill. My relationship with hormonal contraception has never not been complicated. From the age of 14 I’d tried various combined pills and experienced anxiety, depression and serious mood swings which, on and off, have affected me throughout my adult life. I had zero libido for years and only realised just how serious it was when I came off the pill completely in my late 20s. 

I started googling and ended up deep in Reddit and Mumsnet, reading post after post of people describing similar experiences and symptoms to mine. I stopped taking the pill and, shortly afterwards, the other medication I had been prescribed. Within six months I felt like myself again. I haven’t touched hormonal contraception since then and, while I have felt mildly anxious from time to time and certainly experienced highs and lows, I have never, ever – not once – felt like that again. 

Today this is something that is increasingly discussed although it remains an issue where mixed messages abound. Back then, there were fewer studies confirming the link between serious mental health issues and hormonal contraception and even fewer experts prepared to validate accounts like mine for fear of causing a panic that sees all women and people with wombs – even those who experience no negative side effects – coming off their birth control and playing roulette of an altogether different kind with their bodies. 

As ever, in the world of women’s health, the confusion comes down to both a lack of research and a lack of will to properly address women’s reproductive health, hormones and mental health. 

Eleanor Morgan, the assistant psychologist and author of Hormonal: A Conversation About Women's Bodies, Mental Health and Why We Need to Be Heard has since explained to me that "although there is a robust evidence base for the contraceptive pill being well tolerated by many people – including improving PMS symptoms – every person's body and brain is unique; how one person responds to hormonal contraception can be completely different to another. There is significant anecdotal evidence for people feeling emotional distress (anxiety or low mood) when taking the pill, which must be taken seriously."

She adds that it took her six months to convince a doctor to remove her own Mirena coil (the one with hormones in it) because it was making her anxious. 

I can’t count the number of women from all over the world who have contacted me with stories of their own about a mental health downturn which they believe was connected to hormonal contraception. I can’t believe the number who equally feel that they were medicated and dismissed by medical professionals. I refuse to accept that we can’t do better than this; that serious side effects remain a potential trade-off for wanting to have regular, enjoyable sex and avoid an unwanted pregnancy. 

I find comfort and vindication in knowing that I’m not alone but at the same time it perturbs me that so many women seem to have had similar experiences to mine. What concerns me the most, though, is when experts tell me that although we know "a subgroup of women are more vulnerable to both their own hormones and the synthetic ones contained in the pill," we don’t know "how big this group of women is or what’s different about them" because the research doesn’t exist. 

Hormonal contraception is, on the whole, medication that healthy women take. And it could be making us so unwell, taking us away from ourselves and leaving us unable to function. It is still the most commonly prescribed form of contraception in this country but the number of women taking it has fallen. Who is supporting those who now avoid it to make smart choices about their reproductive health?

I know that I will never, ever forget the feeling of wanting to end my life because I couldn’t cope with relentless panic attacks. But will I ever know why I react so badly to the synthetic hormones in hormonal contraception? Will Salma? Perhaps not but that in itself begs a very serious question: if we know this is happening, why aren’t doctors listening to women? Once again, it comes back to the gender medical research gap. 

As things stand, as Eleanor Morgan puts it, the truth is that we just don't know enough about how women's sex hormones influence mental health full stop, let alone what happens once you throw hormonal contraception into the mix. "The problem is that studies on hormonal contraception and effects on mood have mixed results, likely down to how the studies are designed and the ways in which participants' mental health has been measured. There is little consistency," she explains. "The science surrounding whatever signalling changes happen in the emotion-processing parts of our brain during our menstrual cycles is also imprecise, so the air of mystery thickens."

"But," she adds, "just because there isn't an empirical basis of measurement, doesn't mean the distress isn't real!"