For women with a pelvic pain condition, a hysterectomy can represent hope on the horizon. But long delays to non-essential surgery have left thousands of women with endometriosis in limbo while they wait for relief from debilitating symptoms. WH hears from them...
‘Every month, it takes my breath away,’ says Lindsey Fraine, of the crippling endometriosis pain that flares up just before her period. The condition – where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes – affects an estimated one in 10 women worldwide.
In Lindsey’s case, it causes spasms of pain through her lower abdomen, hips and glutes, combined with a cocktail of nausea, migraines, bloating, diarrhoea and recurrent UTIs; anxiety and depression leave her bed-bound for one week out of every four. ‘My work and relationships are put on pause every month – it’s exhausting,’ explains the 43-year-old London-based film producer.
It’s been routine procedure since her teens; increasing with severity following her diagnosis of endometriosis and adenomyosis – another chronic pelvic pain condition – in her late twenties. After five operations – to remove the growths while preserving her uterus – and just as many years of deliberation, she came to the conclusion that a hysterectomy was the right next step, a procedure she hopes will be her ticket to freedom – easing her adenomyosis, if not her endometriosis. The surgery was scheduled for April 2020. Then Covid hit, her operation was cancelled and she’s been on a waiting list ever since.
That chronic pain can be so debilitating that your best option is to have drastic, life-altering surgery is, unfortunately, not news; particularly in the context of a condition like endometriosis. Hysterectomies made headlines in 2018, when the actress and writer Lena Dunham opened up about her decision to have one at 31 to seek relief from a decade of endometriosis pain. Earlier this year, the journalist and host of Radio 4’s Woman’s Hour Emma Barnett revealed that she may, at some point, have no choice but to have a hysterectomy, as she continues to grapple with debilitating symptoms of the condition.
Many hysterectomies – a procedure historically associated with heavy bleeding and cancer – are now performed to remedy pelvic pain. And yet, for the past year or so, it’s an option that’s been largely unavailable. With the NHS focusing on emergency procedures since the country entered its first lockdown, the waiting lists of women due to have the operation for chronic pain conditions – including endometriosis, fibroids, adenomyosis and pelvic inflammatory disease – are set to reach record lengths.
According to research by the CovidSurg Collaborative – a group aiming to explore the impact of Covid-19 on surgical patients and services – the 516,000 planned NHS operations that were called off in the UK during the first 12 weeks of the pandemic created an 11-month backlog. A year on, multiple gynaecologists have told WH that the waiting list for a non-essential hysterectomy could take years to clear. So with this last-resort solution indeterminably on hold, what does life look like for the women living in limbo?
To understand how we arrived at a situation in which women are seeking out drastic surgery in order to relieve chronic pain, you need to go back more than a century, explains Gabrielle Jackson, an endometriosis sufferer and author of Pain And Prejudice. ‘Endometriosis first entered the medical textbooks in 1860, but a historic lack of research into women’s bodies means scientists still don’t understand its cause or mechanisms,’ she says, referring to everything from the routine exclusion of women from clinical trials to the comparatively low levels of research funding that female-only conditions attract.
Indeed, while endometriosis is as prevalent among women as diabetes, it receives just 5% of the research funding. Compounding this problem is the fact that endometriosis is notoriously difficult to diagnose, since it requires an endoscopy – expensive and time-consuming keyhole surgery in which a camera is inserted into the pelvis. Factor in, too, the widespread dismissal of symptoms as typical period-related discomfort – 40% of women interviewed for a report last year by the All-Party Parliamentary Group on Women’s Health saw a doctor 10 times before they were even referred to a gynaecologist – and you begin to understand why this condition takes, on average, seven and a half years to diagnose.
Even after you have a diagnosis, the path is unlikely to be straightforward. ‘The lack of research in this area means we simply don’t know how to treat it,’ adds Jackson. ‘There are treatment options available, but the most effective chronic pain medicine is multi-disciplined, hard to come by and isn’t properly supported in our current medical system. The common treatments offered vary in effectiveness and there’s no known cure for the condition.’
Such options include hormonal contraception (notably, the Mirena coil, which helps to thin the womb lining, treating abnormal bleeding and pain), endometrial ablation, which destroys the uterus lining to reduce heavy bleeding, and laparoscopic excision, where the endometriosis is cut away. But the Mirena might not work for women with larger uteruses, and endometrial ablation risks subsequent pain from regrowth and blood trapped under scar tissue.
What’s more, it’s estimated that endometriosis symptoms return in 40% to 80% of sufferers within two years of uterus-preserving surgery. Then there’s the end-of-the-road option – hysterectomy – which is also not a cure. It’s hardly surprising, then, that studies estimate endometriosis loses sufferers 20 working days a year, while research also indicates they’re at greater risk of developing depression and anxiety.
Such statistics make for bleak reading. But for the women living through this, they add up to years, sometimes decades, of appointments and operations; raised, then dashed, hopes; all playing out against a backdrop of chronic pain. Among the lowlights of Lindsey’s three decades of being tormented by her reproductive organs are having emergency surgery while on holiday in Vietnam and countless referrals to neurologists, cardiologists and urologists, before being told there was nothing wrong.
But speak to any endometriosis sufferer – or indeed any woman suffering from myriad other pelvic pain conditions for which there is no medical solution – and they’ll be able to replay their own worst moments with similar clarity. So you can see the appeal, not least symbolically, of ridding yourself of the organs that have been the source of your anguish – the last-resort option put forward by gynaecologists when nothing else has worked.
The way Dunham framed her hysterectomy in the language of choice underscored the idea that it can be an empowering move, allowing women to reclaim their lives. ‘I may have felt choiceless before, but I know I have choices now,’ she wrote in an essay for Vogue after the procedure. The sentiment is one Lindsey can relate to. ‘It’s been a big, difficult, upsetting process to reach a decision, but now I’m determined to do what I can to take control.’
That this is the backdrop against which the current surgical blackout is playing out makes it all the more devastating for the women waiting an indeterminable amount of time for a longed-for solution to their chronic pelvic pain. ‘We’re having to treat women who are on the waiting list for a hysterectomy with non-surgical outpatient interventions – like medication, injections and heat treatments – to temporarily manage their pain,’ explains Dr Anne Deans, consultant gynaecologist at Frimley Park Hospital in Surrey.
What’s more, there’s the deep irony that, in a year when hysterectomies for pelvic pain have been put on hold, more women may end up needing one as a result. While, if left untreated, some endometriosis does improve – or remains the same – in many cases, it can worsen over time. With less-invasive, uterus-preserving surgical treatments also temporarily off the table, this can progressively narrow the options. Might this mean women are forced to consider the last resort after the pandemic? ‘That is the worry,’ acknowledges Dr Deans. ‘Although we’re doing our level best to avoid that.’
It’s this emotionally bewildering situation that Katie* has found herself in. The story of how the 38-year-old interior designer, living in Edinburgh, came to be diagnosed with endometriosis and uterine fibroids is depressingly typical. After 10 years of GP appointments, in which her heavy bleeding and pain were frequently written off as period-related, she was finally diagnosed in 2018 – after which, her empathetic, informative gynaecologist laid out the options available to her: medication for pain relief, fitting a coil, minor surgery and being put into medically induced menopause.
A hysterectomy was the last resort. She opted for a minor operation to remove uterine fibroids and endometrial deposits – a procedure with an 80% chance of symptom relief. It was set for April 2020, but was cancelled. ‘My doctor called me to say that, without regular monitoring through scans and examinations during the pandemic, I’d reach a point of no return, when the only option would be to remove my womb,’ she recalls. Her initial reaction was one of shock; and while she doesn’t want children, she felt an urge to fight to keep her womb.
The hardest thing for her and the community of women she’s connected with, she explains, is the uncertainty. ‘I’ve now spent a year in limbo, with the prospect of losing my womb, and many women online have told me they’re also facing hysterectomies due to delays. Some are taking out second mortgages to have operations privately or have been driven to take antidepressants. The timing was unlucky, but I can’t help but feel fiery frustration over this situation. I’m not sure many people understand the mental toll years of pain can have on you – it’s not a coincidence that on the support page of the Endometriosis UK website there’s a number for Samaritans.’
A hysterectomy waiting list that’s only getting longer is adding yet another layer of emotion to what is already a deeply emotive issue, explains Dr Sula Windgassen, chartered health psychologist at King’s College London. ‘These women are grappling with chronic pain and life-altering surgery – and as with any treatment option, once you associate it with relief, there’s an impatience to get it done,’ she says. ‘There’s also uncertainty over how well it’ll work, and what other impacts it’ll have. It all adds to the emotional burden.’
She adds that a delay in treatment can increase the weight of expectation that it’ll be the thing that finally works, when the reality is rather more complicated. ‘An important principle for all people experiencing chronic illness is to watch out for that tendency to put any one treatment on a pedestal, and to instead seek support for the emotional aspects of dealing with it.’
The call for nuance is one that’s echoed by Dr Edward Morris, a consultant gynaecologist and president of the Royal College of Obstetricians and Gynaecologists. ‘It’s not uncommon for women to come through the door thinking it’s the straightforward solution,’ he tells WH. He points out that while, yes, a hysterectomy can and does help women who are living with chronic pelvic pain, he wants endometriosis sufferers to know that having one is by no means a cure-all for their condition.
Indeed, women who undergo a hysterectomy have a 15% chance of developing persistent pain even after the surgery, according to a 2014 review of studies. Dunham – who aimed to draw a line under a decade of pain with her hysterectomy – has needed follow-up surgery to remove her left ovary. ‘We need to make women aware that there are risks – not in a way that puts them off – but so they are informed when making a final decision… and hysterectomies should only be raised once all other avenues have been exhausted,’ says Dr Morris, who adds that a benefit of this situation is that women will now have more time to consider their options.
While multiple gynaecologists insisted to WH that the procedure comes with a high satisfaction rate among women who have been freed of pain, the operation can usher in unwelcome side effects. Among them, bladder dysfunction, pelvic pain from scarring, later-life vaginal prolapse (where the top of the vagina bulges into the lower vagina or outside the vaginal opening), hip, back and neck pain and migraines – triggered by organs shifting around.
Hysterectomies have been linked with increased odds of developing obesity, high blood pressure and even heart disease, though scientists aren’t sure why. According to one study, women who have undergone a hysterectomy have a nearly twofold increased risk of entering early menopause. What’s known as a ‘surgical menopause’ happens when both ovaries are removed, but there’s also a small chance it can happen even when the ovaries are left behind.
The mental toll can be significant, too, notes Dr Windgassen. ‘It’s understandable that having parts of your reproductive system – a crucial element of female identity for some – taken away will have a huge emotional impact,’ she says. A 2019 study, published in the journal Menopause, found that women are at greater risk of suffering depression and anxiety after a hysterectomy.
As with so many of the issues that Covid has thrown up, there’s no quick-fix solution. But all the experts WH spoke to for this piece were clear that whether you’re living with chronic pelvic pain with no end in sight or sitting on a waiting list for a longed-for hysterectomy, knowledge is power. Alongside arming yourself with all the information you can find in order to make an informed decision, developing coping strategies is vital, notes Dr Windgassen.
‘Chronic pain plays tricks on the minds of sufferers, telling you this is how you’ll feel forever. If you’re chastising yourself for not coping better or experiencing a lot of angry or wishful thoughts, try to bring yourself back to the present,’ she says. To help you do so, she recommends breathing techniques like extending the exhale longer than the inhale, which activates the parasympathetic nervous system and can help reduce pain. She also warns against pushing yourself too hard when you do feel well – you can find ‘pacing’ diaries online.
As the months have worn on, and the shock has worn off, Katie’s perspective on her increasingly inevitable hysterectomy has begun to change. Now taking a cocktail of up to 14 tablets a day, she’s warming to the idea of a life free from the organ that’s causing her so much pain. ‘Women have told me it’s the best thing they’ve ever done,’ she says. ‘Maybe it will be for me, too.’
As for Lindsey, the unexpected delay to the procedure allowed her time to mull over her decision – before ultimately confirming in her mind that it was the right one. ‘I’ve had all this time to think about, research and even question my decision,’ she explains. ‘Of course, it’s still complicated in my head and, ultimately, I’ll never know if I’ve made the “right” choice, but I’m confident it’s the right one for me at this moment in time, which makes not being able to action that all the more agonising.’
She’s hopeful that declining Covid cases, and the opening up of much of society, will speed her path, a little, towards the procedure that may put an end to her pain. In the meantime, she’s found some relief in gentle Pilates sessions and talking things through with a therapist. ‘It’s hugely frustrating not knowing when it’s going to happen, but I’m doing my best to let go of what I can’t control.’
‘A hysterectomy is an imperfect solution’
Dr Charley Baker, 39, is associate professor in mental health at the University of Nottingham
‘In a sense, I was lucky to be diagnosed with endometriosis relatively early, in my late teens. But, given the condition has no cure, I’ve spent years with the painful knowledge that my treatment options are limited. I was 22 when a doctor first offered me a hysterectomy, and I repeatedly declined the procedure for a decade – fully aware that there were no guarantees that it would work.
But, despite undergoing frequent surgery and regularly using strong pain-relief patches – and with a new adenomyosis diagnosis – I was pushed to that last resort aged 32. The severe discomfort had spread from my pelvis to my back and thighs, forcing me to take days off work and leaving me unable to play with my young son. My doctor warned me that the operation might not ease my pain, but it did help initially, and the chronic discomfort evaporated.
But over the past six years, the constant, dragging pain has returned, and I require codeine and morphine daily. It’s like I’m stepping back in time – I’m in discussions with my doctor about going back on the same medication (monthly injections of the synthetic hormone Zoladex, which blocks the production of endometriosis-stimulating oestrogen) that I had in my twenties. I don’t regret my hysterectomy – but I want others to know how important it is not to pin all your hopes on one thing.
Traditionally associated with cancers and heavy bleeding, the majority of hysterectomies are now performed for pain management
What is a hysterectomy?
A sub-total hysterectomy removes your uterus, so you’ll no longer be able to conceive, says obstetrician and gynaecologist Dr Ellie Rayner. You may also be advised to have your cervix removed (known as a total hysterectomy) – if you have your ovaries and fallopian tubes removed, too, it’s called a total hysterectomy and bilateral salpingo-oophrectomy.
How common is the procedure?
It’s one of the most common gynaecological surgical procedures in the UK, normally carried out on an estimated 55,000 women a year, either on the NHS or privately. As many as one in five women will have the operation at some point in their lives, the majority in their forties and fifties.
What does it involve?
It’s always performed under a general or regional anaesthetic, explains Dr Rayner. Incisions may be made via the tummy or can be vaginal, in the case of prolapse, and you may be kept in hospital overnight for a number of days, with recovery time taking up to eight weeks.
How successful an intervention is it for treating pelvic pain?
For conditions like adenomyosis, fibroids and pelvic inflammatory disease, the success rate is high. But, women with endometriosis have a 15% chance of persistent pain reoccurring. Dr Tania Adib, a consultant gynaecologist, explains that if the ovaries remain, oestrogen will stimulate any endometriosis left behind.
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