The scandal of the three million British women in constant agony

A staggering one in ten of us is living with debilitating pelvic pain – yet we’re still being routinely dismissed by doctors and told it’s all in our head. Enough, says Jo Macfarlane, it’s time to take us seriously… ILLUSTRATIONS: NAOMI WILKINSON

The historic wood-panelled committee room in Westminster Hall was an unlikely setting for a frank discussion on female pain.

It was no surprise that most of the MPs present for the crucial debate last November on the lack of research and funding to understand and treat endometriosis and polycystic ovary syndrome (PCOS) were women. Some even detailed their own, very personal experiences: severe agony, doctors who repeatedly dismissed their symptoms and a dearth of treatments.

endometriosis

And there was one point on which they were all agreed, regardless of their political allegiances. ‘If ten per cent of men were in this situation,’ several MPs asked, ‘would it be the same?’ The answer – a resounding ‘no’ – is as heartbreaking as it is shameful for the estimated three million women in Britain living with endometriosis and PCOS.

The conditions are separate and distinct and cause their own horrendous symptoms. Endometriosis is an excruciatingly painful disease in which the cells from the lining of the uterus grow rampant elsewhere in the body, causing lesions and scarring on organs such as the bowel, bladder and even the lungs.

PCOS, meanwhile, is a hormonal disorder that stops the ovaries from working properly. It causes acne, weight gain, excess body hair and fertility problems, and is linked to type 2 diabetes and anxiety.

However, they were debated together in parliament, following a public petition that gained over 100,000 signatures, because they share brutal common ground: they exclusively affect women, the causes are unknown and there is no cure. Even diagnosis can, in the case of endometriosis, take an average of eight years, according to Endometriosis UK.

In the absence of a coordinated programme of medical investigations for women who may be suffering from these conditions, sufferers are, instead, frequently subjected to ‘medical gaslighting’ and told to take painkillers or the contraceptive pill, or simply to put up with the debilitating symptoms. Furthermore, both disorders are often dismissed solely as barriers to fertility, with women told to ‘go away until you’re ready to have a baby’.

Some resort to self-managing their conditions with the help of advice from online support groups. As Labour MP Alexander Norris put it to the committee chair, David Mundell: ‘To be clear Mr Mundell, there is a one in ten chance that either of us might present to our GP with erectile dysfunction. I know for certain that the GP would not say to either of us to come back when we wanted to have a child, and they certainly would not suggest removing the offending organ. Just as we would not tolerate that attitude, we should not tolerate it for anybody in this country.’

To understand how devastating these conditions can be, just ask Rosie Longman. The 42-year-old was forced to give up her brilliant career as a criminal barrister because of her endometriosis, which was only diagnosed when she was aged 30, despite 15 years of agony.

She’s had several laparoscopic operations (keyhole surgeries), to remove the build-up of endometrial growth. This is one of the few surgical treatments available, which relieves the pain for short periods before the tissue grows back. But last year, Rosie decided to undergo a hysterectomy in a bid to stop the pain for good. Hormonal changes during the menopause can reduce symptoms for both endometriosis and PCOS – and younger women often choose such extreme surgery, or drugs to induce a chemical menopause, as a solution.

‘When you’re in pain, you’re exhausted all the time,’ Rosie explains. ‘I’d recover from another bout of surgery, then start to feel pain and fatigue again. I couldn’t keep doing that to myself. I’d have to drop cases because the court dates would coincide with times of the month when I knew I’d be in agony and might not be able to stand up. Giving up my career was the most difficult decision I’ve ever made. But deciding to have the hysterectomy was a no-brainer.’

A survey on endometriosis for the BBC found almost all women said it had affected their careers. At its worst, Rosie struggled to stand, walk or lie down without being in agony. Parts of her bowel became fused to other organs as the endometrial cells spread through her pelvis. ‘I woke up in pain. I went to bed in pain. It’s like someone is gripping your insides, pulling and twisting them and kicking you in the crotch.’

A hysterectomy removes the endometrial tissue and the uterus and, in Rosie’s case, the ovaries as well. It is not always a cure– the condition, and the pain, can return. Rosie is now on hormone replacement therapy and still has some pain. But overall, it’s ‘substantially better’ than it was and she now has a role teaching students training to be barristers. ‘I always thought I’d have children, but my priority was getting rid of the pain.’

Britteny Gibson’s pain, which left her curled up in a ball on the floor in agony, was dismissed by doctors for 15 years. The marketing officer, 31, who lives in Glasgow, grew up in the US where doctors advised her it was ‘just a bad period’ and to ‘take paracetamol and use a hot water bottle’.

At the age of 18 she was prescribed the contraceptive pill, which suppresses the release of oestrogen from the ovaries, and can slow the growth of endometrial cells. However, the pain increased and she was finally fitted with the Mirena coil, a form of long-term birth control. When this failed to solve the problem, one GP shrugged and told her that ‘70 per cent of pelvic pain is unexplained’.

She was 29 by the time she was referred to a gynaecologist. ‘I thought that finally something would be done,’ she says. ‘I was given an ultrasound, but the gynaecologist just said, “You can’t have endometriosis because the Mirena coil is the cure. If you’re in pain, it must be something else.”

‘I was devastated. It had a huge impact on my mental health. I went back to my car and wept. I’d been in pain almost my whole adult life, and bleeding for weeks at a time, and I was dismissed. It’s not acceptable, and it’s why we have to advocate for things to change.’

In guidelines drawn up by health watchdog The National Institute for Health and Care Excellence (NICE) in 2017, experts warn doctors not to exclude endometriosis if ultrasound scans appear normal because the growth often doesn’t show up. To reach a diagnosis, they instead recommend laparoscopy– a procedure to insert a small telescope into the abdomen. If excess tissue is found, experts can remove it, in a process known as ablation, at the same time.

But these guidelines are still not adopted everywhere. In Britteny’s case, it was only because her husband pushed her to get a second opinion that she was referred for a laparoscopy before her 30th birthday. It found endometrial cells all over her uterus and ovaries, which had stuck to the pelvic wall. They also found adenomyosis, where the endometrial tissue grows inside the wall of the uterus and causes labour-like contractions.

Following surgery to remove it, Britteny takes medication that induces a chemical menopause to block further growth. ‘It’s a life-changing diagnosis but I was so happy it wasn’t in my head. It was like a huge weight had been lifted off my shoulders,’ she says.

A report last year from the All Party Parliamentary Group (APPG) for Endometriosis, chaired by the late Conservative MP Sir David Amess, found access to specialists remained a ‘postcode lottery’. Its survey concluded 58 per cent of women with endometriosis had to visit a GP more than ten times to get a diagnosis, while 21 per cent had ten or more hospital appointments. More than half ended up in A&E – with 27 per cent attending more than three times before being diagnosed.

Overall, endometriosis costs £8.2 billion a year in treatment, healthcare costs and the impact on work. It’s not just deeply distressing for women, but a terrible waste of resources, campaigners say. The report said: ‘Let’s ensure that stories of people being ignored, dismissed and told pelvic pain is normal, or even “in your head” become a thing of the past.’

Labour MP Emma Hardy, the co-chair of the APPG, said the group will meet with Maria Caulfield, the minister for patient safety and primary care, early this year to discuss a way forward, which may include a push to reduce diagnosis times – in Scotland, the government has already committed to slashing these to under 12 months– and to improve sick pay provisions for women with endometriosis.

Emma’s co-chair, SNP MP Hannah Bardell, said there was a ‘real opportunity’ for the UK to lead the world on endometriosis care, but warned that without collaboration and funding for research ‘we will rob the next generation of women of the education, care and support they deserve’.

endometriosis

The same holds true for PCOS. The disease, which affects the way eggs mature in the ovaries, can cause periods to become irregular or stop altogether. But because it is triggered by the overproduction of hormones known as androgens– including testosterone its effects are wide-ranging. Women experience excess body and facial hair, acne, brain fog, weight gain, anxiety and depression. There are even known links to the development of type 2 diabetes.

Yet for June-Ann Joseph – as for many other affected women – there is little help available. The 33-year-old from North London, who now campaigns on PCOS issues, says: ‘I was diagnosed at 17, given a leaflet and told, “Come back when you want to have kids.” That was it. But it’s far more than irregular periods. It’s everything‒ I’ve been affected physically and mentally. I’ve had three bouts of depression, insomnia, anxiety, weight gain and dry eyes. I get awful brain fog. I work in HR, so I need to know about policies, procedure and employment law, but some days I can’t retain information. I also have insulin resistance– the stage before type 2 diabetes. But no one knows why, and I have to advocate for myself.’

Treating PCOS purely as a fertility problem means there is not enough research on the myriad other problems it causes, according to Rachel Morman at Verity, the UK’s PCOS charity. ‘I know women who were left childless, despite desperately wanting children, who didn’t get enough support,’ she says. ‘But there are other women who report trying to use battery acid to scar their faces because that’s better than the excess hair. What about the links to type 2 diabetes? The only treatment is the contraceptive pill, but that just masks the symptoms.

‘We need much more research, better aftercare for women once they’ve been diagnosed, and a realisation that PCOS is about far more than fertility.’

There are green shoots. The government’s Women’s Health Strategy, which is currently under consultation and will be published in the autumn, is expected to make updated recommendations for PCOS and endometriosis. And there are several research projects investigating biomarkers for these conditions, which would mean they could be diagnosed from a simple blood test rather than invasive surgery.

A study in Edinburgh is also investigating a cancer drug, dichloroacetate, to see if it could be used for endometriosis. Endometrial cells, like cancer cells, seem to produce higher levels of lactate, a harmful waste product. The drug lowers the amount of lactate and reduces the size of lesions. Patients in a trial reported that it had a ‘huge impact’ on their symptoms.

But more needs to be done. Andrew Horne, professor of gynaecology and reproductive sciences at the University of Edinburgh, says: ‘Diagnosis is the tip of the iceberg. Predicting how the disease is going to behave, and how it might respond to treatments and hormones and surgery, would be revolutionary.’

For Emma Cox, chief executive of Endometriosis UK, the next steps are simple. ‘We need to value women’s lives more,’ she says. ‘Women want to live fully, and free of pain. It’s not much to ask. Let’s throw money at this, work out what’s causing it, how to diagnose it better and, hopefully, how to stop it.’

For more information, visit verity-pcos.org.uk and endometriosis-uk.org