Hysterical Women of the Week: 12 May

A roundup of what’s been happening in women’s health this week

This week’s guest post was written by Bev Burrows, who’s suffered from chronic pelvic pain ever since undergoing mesh surgery to treat her incontinence. It’s outrageous that the vaginal mesh scandal is still dragging on, despite so many women coming forwards to share their stories.

This week Sling The Mesh campaigners protested in London and Manchester, against the new NICE guidelines on the procedure, and against the closure of Dr Suzy Elneil’s mesh removal service. Kath Sansom, one of our previous guest bloggers, also reported for us from the protest, telling Hysterical Women that: ‘Every woman harmed by mesh has been failed by the system. It is institutional betrayal.’

In other news this week…

Woman with ovarian cancer ‘fobbed off’ by doctors

Wednesday 8 May was World Ovarian Cancer Day, and Target Ovarian Cancer published a report highlighting the ongoing postcode lottery in early diagnosis of this cancer across the England. ITV reported on the experience of 57-year-old Jennie Allen, whose concerns were repeatedly dismissed by her GP:

Ms Allen was diagnosed with ovarian cancer in 2013 after a series of delays, saying she was “fobbed off”.

She said: “Despite a complex gynaecological history, my GP first sent me for tests for IBS, a bladder infection, then to see if I had coeliac disease.

“At this point I was frustrated, and went to see another doctor for a second opinion, and insisted on having a CA125 blood test. From there, I had ultrasound scans and found out I had advanced ovarian cancer.

“Too many women get fobbed off and told they have bladder infections, IBS, that it’s to do with the menopause. This must change.”


Woman bedbound for two years says doctors told her chronic illness was ‘all in her head’

Another local news story for ME awareness week, this one from Hull Daily Mail:

“In every country around the world patients with ME are ignored, disbelieved and stigmatised,” said KT, who spoke out as part of ME Awareness Week.

“Imagine you have been gardening, doing DIY all day or hiking on holiday when you are not used to it. Think how it feels when you lie down at the end day – how every bone in your body aches, how every muscle feels bruised, how you can’t wait to feel the bed supporting you at last.

“Well, that’s how we feel all day, every day without even having gotten out of bed.

“Imagine that you cannot earn a living, cannot raise a family, your relationships break down and without family support you at risk of becoming homeless and at worst commit suicide – no-one believes you are ill.

“One issue with being believed is that the way we feel fluctuates so much. We have good days, medium days, bad days and horrific days. You might see us out and about on a good day, you’ll never see us on a bad day.”

KT suffered with the condition for 25 years after being repeatedly told it “was all in her head”.  The housebound writer says the “utter exhaustion” of the condition left her crippled every time she even got up to use the toilet.


My Breast Implants Made Me Sick

Like vaginal mesh, stories about the side effects of breast implants have been rumbling on for years, with women being continually fobbed off with reassurances that these products are “low risk”.  The Cut told the story of Maria Gmitro, whose breast implants caused so-called ‘breast implant illness’ – “a condition associated with symptoms like chronic fatigue, pain, cognitive and immune problems.”

From there it progressed. I was more tired, I felt more anxiety, and such fatigue I thought maybe I was depressed, even though I wasn’t. I just couldn’t figure out what on earth was going on, because I was going to the doctor and having tests come back with the normal limits. Fast forward another year — I had more fatigue, more doctors, and was being put on more medications. By the fall of 2016, I had to stop working…

Once I started really wondering, I would mention [the implants] to doctors, and they would just say, ‘Oh, no, the FDA says they’re fine. It’s definitely not your implants.’ Most of the doctors I saw said that. [Breast illness] advocates in the past have dealt with stigma, and felt dismissed by doctors, because augmentation is a cosmetic procedure, but I didn’t.


The Common Hormonal Disorder Doctors Can’t Figure Out

Medium this week looked at why doctors have such difficulty diagnosing polycystic ovary syndrome (PCOS), despite the fact it affects as many as one in ten women.

2016 study from the University of Pennsylvania School of Medicine found that nearly 50% of women with PCOS saw three or more health professionals before getting a diagnosis, and for about a third of women, it takes more than two years to receive one.

Doctors and researchers still don’t know a lot about PCOS, and there are even some parts of the syndrome they can’t agree on.That ends up hurting potential research that could be done on PCOS and the women who may receive misinformed care as a result.


BAME women are let down by the health system – nowhere more so than in gynaecological health

Dr Christine Ekechi wrote a brilliant and important piece for The i, looking at the combined racial and gender bias facing BAME women in gynaecological healthcare, and the health system more broadly.

The differences in outcomes for BAME women exist even when we remove factors such as education and social class, and this likely represents systemic negative bias within our health system.

Implicit bias is inherent within medicine and negatively affects how we perceive and treat patients. BAME women are less likely to be prescribed pain relief, more likely to undergo debilitating surgery and less likely to be listened to, often suffering from a later diagnosis even when presenting early.

Poor experiences result in BAME women inevitably shunning the medical profession. Additionally, health campaigns created to raise awareness typically lack the imagery and language to reach out to different cultural groups. Lack of visible representation creates the perception that the problem “affects them, not us.” Of course, this could not be further away from the truth.


MPs slam Government for ‘losing its grip’ as women’s cancer screening falls to lowest in decades

I’ve written several times about the issues with cervical screening, and The Public Accounts Committee this week criticised the government for failing to meet its targets across all cancer screening programmes – including cervical, bowel and breast cancers. “Our inquiry has exposed a health service that is losing its grip on health screening programmes,” said MP Meg Hillier. “Many individuals waiting for delayed results will suffer avoidable anxiety, stress and uncertainty. Those delays also stretch far beyond the Department’s target waiting periods… Ultimately, this is a question of health equality. The Government has a duty to ensure that everyone has access to health screening.”


“Most vulnerable women are being repeatedly failed”: A call for trauma-informed NHS approaches

One of the peer reviewers from Agenda and AVA’s recent report on multiple disadvantage wrote for Mental Health Today, explaining why a trauma-informed approach is vital to support survivors of sexual and domestic violence.

A few months ago, I went through one of my worst mental health crises. In A&E, doctors said I didn’t need to be seen and one implied my family shouldn’t have stopped me when I was suicidal. I was told to call a phone number, who told me to call another number, who told me to go back to A&E. When I pointed out I was being sent in circles, each person insisted someone else had been ‘commissioned’ to deal with this. Unsurprisingly this didn’t make me any better and the crisis continued.


And finally…

Hysterical Women is full of women’s stories of being dismissed, disbelieved, and not taken seriously by their doctors. So empathy isn’t something we write about all that often – but it’s clearly a vital part of the solution to so many of the problems our guest bloggers, and I’m sure many of our readers, have faced when dealing with healthcare professionals. The Conversation this week published a fascinating article by researcher Jeremy Howick, looking at the positive effects of empathy in medicine. He writes:

We’ve recently quantified the effects of therapeutic empathy the same way drug effects are quantified. More and more carefully controlled trials are comparing what happens with healthcare practitioners who practice empathic, positive communication (being positive is a part of empathy), with those who carry on as usual. The results are overwhelmingly encouraging, with empathic and positive communication improving conditions ranging from lung function and length of hospital stay, to painpatient satisfaction and quality of life. There is even evidence that it makes the common cold go away faster.

From related research, we also understand more about how positive empathic communication works. First, you need empathy in order to make a correct diagnosis. Without it, patients may not share symptoms, especially embarrassing ones.

Next, an empathic doctor will help put a patient at ease and reduce their stress. Dozens of trials suggest that relaxation reduces paindepression and anxiety and even lowers the risk of heart disease.

Being positive also activates the patient’s brain in such a way that the patient makes his or her own painkilling endorphins. Empathic positive communication also increases patient satisfaction. Satisfaction, in turn, is correlated with safer and better health outcomes.

From my research in this field, it is clear that most areas of healthcare (bar those emergency situations) could benefit from being more empathic. But it is also clear that systems need to change so that healthcare practitioners can spend more time on empathy than on paperwork. In the words of the physician William Osler: “The good physician treats the disease; the great physician treats the patient who has the disease.”

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