I Had A Stroke At 20 Because Of The Pill

It’s time we all had a frank conversation about hormonal contraception. At present, around 3 million women in England are taking the combined contraceptive pill – that’s twice the population of Manhattan. Worldwide, the number surpasses 100 million. For the vast majority, it does what it says on the tin, providing reproductive autonomy and ensuring that an unwanted pregnancy doesn’t automatically follow having sex. However, for too many there are side effects. Weight gain, mood swings, nausea, loss of libido and breakthrough bleeding are seen as par for the course and generally accepted as a small price to pay for preventing unplanned pregnancies. For an unlucky few, the consequences are far more severe.

According to a study, those who had used the pill in the previous year were exposed to triple the risk of developing a venous blood clot. On average, five to seven women in every 10,000 who are using a contraceptive pill will develop a blood clot in 12 months. One of these women was Fallan Kurek, a 21-year-old teaching assistant from Tamworth. She was prescribed the combined contraceptive pill to regulate her periods. Shortness of breath and limb pain followed. Three weeks later she collapsed at home due to a blood clot on her lung and never regained consciousness.

The pill she’d been prescribed was Rigevidon. This pill is almost identical to other commonly prescribed pills like Microgynon and Ovranette but was introduced to the market more recently and costs 3p per pack to produce. It contains 30 mcg of ethinylestradiol (the synthetic version of oestrogen) and 150 mcg of levonorgestrel (the synthetic version of progesterone).

As one of the cheapest options readily available on the NHS, it’s one of the most commonly prescribed contraceptive medications in the UK. And it’s earned a bad rep. This particular brand has prompted a slew of viral Facebook posts warning of the serious side effects it can trigger, and has even inspired an online petition to get it banned. 

A recurring theme in the stories from those women who have been negatively affected by the drug is the lack of education and information when it comes to hormonal contraception. Dr Charis Chambers, a gynaecologist also known as The Period Doctor, says: "In general, women are not educated enough about their contraceptive options. Doctors’ appointments are limited in time, so we often choose to highlight the risks that are most common and concerning."

This is something I feel particularly passionately about. Last year, my 20-year-old sister, Nia Phillips, suffered a rare type of stroke known as venous sinus thrombosis as a direct result of taking Rigevidon. This kind of stroke is thought to account for less than 1% of all strokes, according to the Stroke Association. 

Here, Nia talks about her illness, the way it changed life as she knew it and how better sex education could save lives.

"The UK has been in lockdown since March but for me, the door to the outside world closed a year ago. Last September while my friends were partying at university, I was in hospital with a life-threatening brain injury. It wasn’t exactly how I’d planned on spending my last Freshers’ Week.

I’d experienced a type of stroke known as a venous sinus thrombosis. It was a terrifying experience but the scariest part was finding out it had been caused by my contraceptive pill. 

For the previous three years I’d been taking the combined contraceptive pill Rigevidon. I felt safe on it because most of my friends were taking it too. Being prescribed it was almost a rite of passage for girls in my school. The implant, injection and coil might as well have not existed because in our little bubble, we were all on the pill. It would have been weirder not to be.

Before I started taking it I didn’t know there was a combined and mini (progestogen-only) pill, let alone different brand names for both. My boyfriend was equally clueless. We used to joke that I’d be his ‘baby mama’ if I was late taking a tablet but that’s as far as the conversation ever went. The thought of an MTV camera crew turning up was more of a concern to us than the potential for a traumatic brain injury.

It didn’t help that sex education in school was a carbon copy of the Mean Girls scene where Coach Carr says: 'Don’t have sex because you will get pregnant and die.' Contraception was only talked about in terms of preventing STIs and swelling bellies. The physical and mental health implications were never mentioned. When I eventually went to my GP to discuss going on the pill, clotting was reeled off along with a long list of other side effects. I filled the prescription and didn’t research it any further. 

When I started experiencing symptoms of a blood clot, I didn’t even recognise the signs. It didn’t help that it was my first week back at university, or that I’d spent the best part of my week drinking Mojitos and downing vodka shots. When I woke up one morning with a headache, I assumed I was hungover. But it soon turned into an excruciating migraine; my vision was blurry, I was vomiting and my head felt like it was filling up with fluid.

I tried sleeping off the pain but every time I woke it was as bad as before. By day three I knew something was seriously wrong and made an appointment with the out-of-hours doctor. Being young, female and a student, I wasn’t taken particularly seriously. I was told my symptoms were alcohol-induced and sent away with a box of codeine. 

The medication did nothing to ease my symptoms. By this point I hadn’t eaten or showered in a week and assumed I had a really bad case of the flu, so I decided to travel home to Wales. If I was going to be this ill, I wanted it to be from the comfort of my own bed and within easy reach of my Cheetos stash.

Back in Carmarthenshire my mother booked an emergency eye appointment with the local optician. I now see her as the person who saved my life. During her examination of my eyes she noticed there was swelling on my brain, and I was sent to hospital for further tests.

The momentum started to pick up from there but nobody panicked or worked with any sense of urgency. I was given an ultrasound on my eye and sent for an MRI scan – which meant ingesting this gross dye which makes you feel like you’ve wet yourself and played tonsil tennis with a rusty nail – to confirm what doctors suspected was idiopathic intracranial hypertension (a build-up of pressure around the brain, which is a condition most commonly associated with women of my age).  

That’s when everyone started shitting themselves. I was told by a male junior doctor I had a blood clot on my brain and quickly stabbed with a blood thinner. He apologised with tears in his eyes for not acting sooner. I was a ‘classic case’, he didn’t know how he missed it and said he should have trusted that I knew my body better than he did. 

When I eventually saw a consultant, he basically said the clot was ‘fucking humungous’ and that I’d suffered a rare type of stroke. He told me as I had no other risk factors – smoking, obesity, pregnancy, etc. – my brain injury was most likely caused by the contraceptive pill (further genetic tests later showed I was not naturally predisposed to clotting). I didn’t process what he said at all. I just remember being annoyed that my cornflakes had gone soggy when he delivered the news.

For the duration of my 12-day hospital stay, I spent most of my time asleep. I was so photosensitive, I couldn’t watch the TV on the lowest brightness and my parents went full DIY SOS, sticking old Amazon boxes to windows and hanging sheets from the ceiling to stop any light from coming into my room. Even the mirrors had to be covered and a huge umbrella was permanently attached to my bed. I looked like the demented love child of Mary Poppins and Dorian Gray, and the hospital staff didn’t let me forget it.

Bar the horrendous pain and casual brush with death, I had a fantastic time in the hospital. I loved having banter with the nurses, I caught up with family – including my mother, who spent the whole time curled up on a camp bed next to mine – and was brought three square meals a day. But I was relieved to be discharged before my 21st birthday. Nothing was going to stop me from partying, even if it was like an 80-year-old. The lights were dimmed, everyone spoke in hushed tones and I was home by 9.30pm but I got to wear a nice dress, do my hair and makeup, and the umbrella enjoyed a rare night in.

As part of my ongoing treatment, I still have to take warfarin (blood thinners) every day and my INR (international normalised ratio, the laboratory measurement of how long it takes a blood clot to form) is checked anywhere between once a day and once a month. I’m not allowed to drink cranberry juice or eat egg whites, avocados or spinach as vitamin K is apparently warfarin’s kryptonite. Oh, and alcohol is the biggest no-no, because I obviously haven’t suffered enough.

Twelve months on, I’m still exhausted by simple tasks, I can’t sit in the sun for too long or tolerate bright lights or loud noises. I’ve had to defer university for a year and I no longer drive. I try to live my life as normally as possible but throw in a global pandemic and normal feels like a distant fever dream. 

Earlier this year I spent the majority of a Jonas Brothers concert lying in a dark corridor, and I ended up on first name terms with most of the St John Ambulance crew at the England vs Wales clash at Twickenham. When I did manage to tolerate a Lewis Capaldi concert, it was only because he completely lost his voice halfway through his set.

I still haven’t properly processed what’s happened to me. For the first couple of months after the injury I was completely numb to it and didn’t cry once. Even now it still hasn’t fully sunk in. It’s difficult because there’s only so much my friends and family can try to understand. It also doesn’t help that my illness is largely invisible. That’s why I’m using my voice now. What happened to me might be statistically rare but it happens. It is a known fact that the combined pill increases a woman's risk of stroke.

The pill is a medication which is, largely, taken by healthy people. It can make you very sick and I want young women to hear stories like mine, I want them to ask questions and research the contraceptive options that are suitable and safe for them. I want schools to teach young people about more than just condoms and periods, and what I want most of all is for doctors to trust that women know their own bodies. 

If I’d known the risks, I would have realised what was happening to me sooner. I sometimes wonder whether gender bias in healthcare negatively impacted my care and the historic clinical decisions leading up to it. Would I have been taken more seriously had I been a 30-year-old professional man during that first visit to the GP? Would more research have been done into the combined contraceptive pill if it were taken by men? These are terrifying questions to confront but ones that desperately need to be asked, because until medicine is free of inequality and we as a nation are well-informed of all of our contraceptive options and their side effects, women like me will continue to be at risk of stroke, and that simply isn’t good enough."

Refinery29 reached out to Gedeon Richter, the manufacturer of Rigevidon, for comment. A representative said:

"For more than 20 years Rigevidon has provided a safe and effective contraceptive method for millions of women. Many side effects and risks are considered to be class effects of COCs (combined oral contraceptives), like bleeding disturbances, mood swings, depression, decreased sexual desire, weight gain, acne and fatigue. Blood clots formation is a rare but well-known class effect of all COCs. Related contraindications, warnings, precautions of all side effects are clearly highlighted in the package leaflet.

Patient safety is a top priority for our company. Besides complying with the most stringent regulations of pharmaceutical manufacturing and conducting rigorous quality testing during the manufacturing, we are committed to continuously review the safety profile of our products. All adverse event cases that we receive information about are investigated thoroughly and reported to the relevant health authorities according to the applicable regulations."