Last week, a report from the All-Party Parliamentary Group on Women’s Health (APPG) confirmed what many women already knew: doctors are failing to treat women with dignity and respect when it comes to their mental, gynaecological and overall physical health.
The report, ‘Informed Choice? Giving women control of their healthcare’, surveyed over 2,600 women and sent freedom of information requests (FOI) to hospital trusts. This revealed that when it comes to problems like fibroids and endometriosis in particular, women are experiencing what the APPG has deemed to be ‘unacceptable’ treatment. They also found that women are not getting the right diagnosis and information about treatments, with 62 per cent of the women they surveyed reporting that they were not satisfied with the information they were given.
Philippa, 28, told The Debrief ‘I was ignored by doctors for about 3 years before finally being taken seriously and booked in for a laparoscopy. Since then I’ve had two operations.’ Pritti, also in her twenties, was dismissed for years even though doctors could see she was ‘in agony’. She even took herself to the Women’s Hospital in Birmingham where she says she ‘received much sympathy’ but was told she could not be seen without a referral from her GP, which she was not being given. Georgie, in her early twenties, told The Debrief of how she suffered with period pains that made her pass out. She was told by a doctor that she ‘just had painful periods’ and that was that. She was, eventually, given a laparoscopy and told by the doctor that she had endometriosis which could not be treated. She wasn’t satisfied with this so she sought the opinion of another doctor, they told me I didn’t have it all’ she said, ‘I’ve since been put on Rigevidon (a form of hormonal contraceptive pill) and told I’m not allowed to come off it for four months. They say it’s the only option for me despite having so many side effects.’
These women all suffer from endometriosis. They have all felt dismissed and discredit by health professionals who are supposed to care for them. This matters because endometriosis is a very serious condition which involves womb tissue growing outside the uterus, leading to painful bleeding, painful sex, stomach aches, potential infertility, crippling pain and, in some of the most extreme and severe cases, the need for keyhole surgery and, if that doesn’t work, the decision to induce perform a hysterectomy in young women. None of this is to be belittled or taken lightly.
The focus of the report was endometriosis but the failure of doctors to provide what the APPG term ‘appropriate treatment’ extends beyond this ailment. As Natasha, 28, who has a hereditary back condition called ankylosing spondylitis (a form of inflammatory back arthritis), puts it ‘it’s fine now as I’ve been on treatment for three years but it was very shit, doctor after doctor just said I was “stressed” or “being a hypochondriac”,’ this left her feeling dismissed, frustrated and with lasting damage to her spine by the time she was finally diagnosed.
What is perhaps most galling, is the perception that women are ‘hysterical’ or ‘hypochondriac’. This is, undeniably and outdated, damaging and inaccurate stereotype. Indeed, this stereotype is so pervasive that entire reports have been devoted to debunking it. In 2003 a paper was published in the Journal of Law, Medicine and Ethics, it’s title was ‘The Girl Who Cried Pain: A Bias Against Women in The Treatment of Pain.’ In a nutshell, it found that ‘women report more severe levels of pain, more frequent incidences of pain and pain of longer duration than men’ but, nonetheless, women are ‘treated for pain less aggressively than man’. These findings suggest that the stereotype of weak complaining, moaning women, who bruise like peaches and cry at the slightest pinch and men who are strong, sturdy and shatterproof, exists as much in the doctor’s surgery as it does in the media, advertising and our shared societal psyche.
The authors of the paper, Diane E. Hoffman and Anita J. Tarzin, cite ‘one particularly troublesome study’ which found that ‘women are more likely to be given sedatives for their pain and men more likely to be given medication.’ This certainly speaks to Natasha’s experience. Her dad has the same condition as her and she explains ‘you normally develop it in your twenties, one of the problems with it is it’s actually a condition which people thought only men could get, but because the symptoms present differently in women that certainly didn’t help.’ She explains that doctors dismissed the issue as psychological, ‘I found that when I went to the doctor they would just give me a blood test, nothing would show up (obviously) and I’d just be told I was stressed or had anxiety. A few doctors were like “well…your chosen career is stressful” or they would ask me about my relationship. I brought up this back condition and explained that my dad has it but all they said was “that’s very unlikely”.’
When Natasha ‘finally’ got a referral to a consultant, around two years after first experiencing the pain, she says she ‘got a really bad consultant. He said there was nothing wrong with me and tried to put me on Prozac for stress.’ When she did get an X-ray it didn’t show anything, ‘but that’s not surprising because it doesn’t show up until the damage was already done. Because I kept getting fobbed off with the stress thing, by the time I got diagnosed I had a bit of irreparable damage to my spine.’ She has now been on medication for three years and says ‘apart from the permanent damage I’m actually fine because the medication works and it’s in remission.’
Similarly, Hanna suffers from a serious condition which was overlooked for a decade. ‘I’ve suffered from cluster headache attacks for over ten years and only recently been diagnosed. Two years ago I told my doctor I thought that’s what it was and he said that I probably didn’t have it because men are six times more likely than women to suffer from cluster headaches.’ What did she think when he said that to her? ‘Well, I wondered if this stat is true or whether men are just taken more seriously when suffering with such intense pain and therefore fewer women are diagnosed with the condition.’ And what’s the status of her diagnosis and treatment now? ‘A doctor finally believed me six months ago, after I hysterically cried in the surgery! I still don’t have a treatment that works though.’
So, what on earth is going on here? Do men and women really experience pain differently? Are women, simply, taken less seriously when they say they are in pain? Or, is there something else at play? Over to Hoffmann and Tarzian: ‘we conclude, from the research reviewed, that men and women appear to experience and respond to pain differently, but that determining whether this difference is due to biological versus psychosocial origins is difficult due to the complex, multicausal nature of the pain experience. Women are more likely to seek treatment for chronic pain, but are also more likely to be inadequately treated by healthcare providers, who, at least initially, discount women’s verbal pain reports and attribute more import to biological pain contributors than emotional or psychological pain contributors.’
Aura is 26, she was diagnosed with Polycystic Ovary Syndrome (PCOS) at 16 after pushing for blood tests. ‘The doctor gave me very little information about PCOS, they described it as a condition which had symptoms that I would just have to put up with or take the pill to mask. I was also told I would never be able to have children. At 16!’ At this time, she lived independently of her parents and ‘didn’t think to get a second opinion’ because she trusted her doctor, she also notes that information online was limited at the time. She discovered later, aged 21, that she was not in fact infertile, after becoming pregnant at which point doctors told her nothing has been written on her file whatsoever about PCOS. ‘Later, official diagnosis came when I was taken into hospital for a burst ovarian cyst, after an ultrasound PCOS was recorded on my file but, again, I was given no information about it.’ She says ‘everything’ she has learned about her condition and reducing symptoms has been ‘trial and error, learned on forums and taking advice from friends who also have the condition.’
How did all of this make Aura feel? ‘I felt dismissed as a hypochondriac in the years before diagnosis. I was trying to push them to take these symptoms seriously and it was met with a sea of feigned interest and condescending explanations. I really got the sense that the doctors thought PCOS was made up, “mumbo jumbo” or something. No effort was made when it comes to discussing my symptoms – acne, eczema and hair loss / excessive hair growth. I get the sense they really didn’t think it was a real thing.’
So far, so damning. Paula Sherriff MP, Chair of the APPG has said of the report: ‘I was shocked by some of the stories we heard. The group has found that best practice does exist, and there are ways that women should be treated in the NHS. Women should not be dismissed and ignored, they should be referred to appropriate care and then given information and all possible treatment options, and their side effects and complications.’ Clearly, this is not happening.
In response to the APPG’s report, the Royal College of GPs (RCGP) has said:
‘Women’s health constitutes around a quarter of a GP’s workload; we know that both endometriosis and fibroids can cause women considerable pain and distress, and these are both conditions that GPs and our teams are aware of and take seriously.’
‘Women’s health is a key part of the RCGP curriculum which all GPs must demonstrate competence of in order to practice independently in the UK – and both endometriosis and fibroids are covered in the exams that GP trainees must pass in order to attain MRCGP.’
‘The College has recognised women’s health as a clinical priority over the next 12 months and will shortly embark on a programme of work to develop resources to support GPs and our teams in the identification and treatment of women’s health issues. We look forward to working with a number of organisations, including the WHAPPG and other medical royal colleges, to inform this project.’
This response is all very well and good. How heartening to know that women’s health is going to be made a priority. It is 2017, after all. Then again, Hoffmann and Tarzian published their paper in 2003 so you have to wonder why women’s voices, telling of extreme pain, have not been heard until now?
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This article originally appeared on The Debrief.