'Dianette gave me a stroke': Fit and healthy woman who suffered devastating stroke at just 29 blames her contraceptive pill
Doctors were unable to confirm that Dianette caused her stroke but they admitted that it probably played a role.
Thirteen years on, she is angry that more isn’t being done to eradicate the pill that remains widely prescribed to women both as a form of contraception and as a treatment for acne: ‘So many women’s lives are being put at risk and it should be banned.’
In February this year the European Medicines Agency, announced that Dianette would be investigated after it was linked to four deaths. Regulators in France have since suspended sales of the hormone treatment.
- In the UK, concerns about the drug were raised after the deaths of several young women, among them Shannon Deakin, 16, in 2011 who died from blood clot after taking Dianette for a month.
Dianette - or Diane-35 as it’s known in France - is prescribed to more than 62,000 British women a year, usually for polycystic ovary syndrome (PCOS), a hormonal problem affecting young women which leads to multiple small ovarian cysts, irregular periods, acne and excess facial hair.
In February the European Medicines Agency announced that Dianette would be investigated after it was linked to four deaths. Regulators in France have ince suspended sales of the hormonal treatment
It is a combination of two drugs - cyproterone (a form of the female hormone progesterone) and ethinylestradiol (an oestrogen), which effectively suppress the effect of testosterone.
As progesterone prevents ovulation, Dianette also works as an effective contraceptive. While other oral contraceptives carry a small increased risk of blood clots - which can be dangerous and potentially fatal if they travel to the lungs or brain - the type of progesterone in Dianette means the drug has one of the highest risks of blood clots of all oral contraceptives.
Cyproterone is 65 per cent more likely to cause a blood clot than levonorgestrel (a type of progesterone found in older oral contraceptive pills), according to a review of 25 studies published last year in the European Journal of Contraception And Reproductive Health Care.
The French medicines agency last month revealed Dianette is widely used as a contraceptive in France. It is not clear what the situation is in the UK.
The risk of a blood clot while taking Dianette is, however, small.
Angela has been left unable to use her left arm, walk or balance properly and suffers with poor short-term memory. She blames Dianette for her stroke and is angry that it is still widely available
Around 40 of every 100,000 women on it develop a blood clot in one year, compared with between five and ten women in 100,000 who are not taking the drug, according to the Medicines & Healthcare Products Regulatory Agency (MHRA).
Before her a stroke, Angela was an avid sportsperson, regularly running, skiing and even taking part in swimming competitions.
She had no history of strokes in her family, had normal blood pressure, enjoyed a healthy diet and never drank to excess.
Despite her fate, Angela (pictured celebrating her 40th birthday) is now managing to do more sport as she did before her strokeShe moved to Sydney in January 2001 and after some years of suffering with irregular periods she was diagnosed with PCOS.
She was prescribed Dianette and suffered no immediate side effects.
But one night in June 2002, Angela said she started to feel nauseous. She had enjoyed a couple of drinks and a meal out with friends and returned home sober that night.
Hours later she woke up to find herself on the floor next to her bed and unable to move.
‘I didn’t know what was going on and despite an overwhelming urge to get up, I simply couldn’t move,’ she said. ‘It was terrifying.’
Angela managed to reach her mobile phone and called her then boyfriend James who lived in Brisbane at the time.
‘He could tell there was something seriously wrong because I was slurring my words, so he called my two other flatmates, who were in neighbouring rooms, to find out what was wrong.
'My flatmate came into my room, picked me up and put me on the bed. None of us for one second thought I’d had a stroke – I was only 29.’
Unsure of what had happened, Angela’s flatmate took her to the nearest hospital. Doctors immediately knew the cause of the symptoms.
‘My whole left side was paralysed and the first thing the consultant said to me was “Have you seen your mouth?”. It had drooped entirely,’ she added. ‘I still couldn’t quite get my head round the fact I had suffered a stroke though – it was something old people had and often they died.
'This sort of thing wasn’t meant to happen to people like me.’
Angela was also unable to recognise faces of close friends and doctors were concerned she would not be able to walk again.
A raft of tests were carried out to discover how she could have suffered a stroke – they even thought she had a hole in her heart at one point - and although they could not confirm any obvious reason, the doctor said that Dianette may have played a role.
Since her stroke, Angela has been reluctant to let the after effects of her stroke get in the way of enjoying her life. Here she is pictured (right) in Sri Lanka and last year she even climbed Mount Snowdon
Angela then spend the next three months in hospital, with the first six weeks in Sydney and the final in Edinburgh.
She underwent intensive physiotherapy, speech therapy and since then has made a moderate recovery, although she still finds it very difficult to walk, balance, remember and still cannot use her left arm.
‘I’m managing to swim again, albeit with one arm, and I’ve even tried adapted skis so I can get myself back on the slopes.
‘But I’m angry – and I’m even angrier that the pill is temporarily banned in France and not more widely.’
Angela, who now works in the charity sector, said that the stroke has caused her to mourn the life she once had.
Shannon Deakin, 16, had been taking Dianette for around four weeks before she died from an undiagnosed deep vein thrombosis
‘You end up almost grieving yourself and to be honest I don’t think I’ve ever properly get over it – I’ll just get on with it.
‘The after-effects of a stroke affect your confidence so much and the frustration of not being able to do the things you once took for granted changes your personality.
'I try to be positive but I'd be lying if I said I wasn't sometimes sad about the way things have turned out.’
Indeed the emotional strain of the stroke caused her relationship to James to break down and she say she is not confident she will ever find another partner again.
‘I’ve tried dating websites but it can be tremendously frightening.
'You worry you’re going to be judged for having a limp and I’m a bit slower on the uptake which can make conversations more difficult.'
But Angela's main concern is now to raise awareness about Dianette and stop more women using it.
'A risk is there and it shouldn't be - especially if women are prescribed it so routinely. I want it to banned.'
In a statement, Bayer, the manufacturer of Dianette, said: 'Based on the currently available clinical data, the benefit-risk profile of Dianette is favorable. We will continue to provide information that supports healthcare providers and their patients in making informed decisions.
'The arterial thromboembolism (ATE) risk (which includes stroke) is slightly increased for women taking Combined Oral Contraceptives (COCs) when compared with non-users.
'Dianette acts as a combined oral contraceptive but should not be used solely as an oral contraceptive.
'It should only be used for the treatment of severe acne if prolonged antibiotic therapy has failed or for the treatment of excess facial hair.
'The slight increase risk of ATE is a well known class effect of COCs and is clearly stated in the patient information leaflet of all COCs.'