This chronic and painful disease affects 176 million women worldwide, but in 30 years barely any advances have been made in treating or curing it. Our special report, from endometriosis sufferer punteha, reveals the unpalatable reason why

EXCLUSIVE REPORT | Long read

I won’t beat around the bush (no pun intended). If you’re reading this and, like me, you suffer from endometriosis, you’re going to be outraged by the answer to my next question.

Why, in decades of countless medical advancements, has no real progress been made in finding a cure or treating endometriosis effectively? Answer: It doesn’t kill women.

It doesn’t kill women. Let that sink in.

Because the condition rarely causes death in the one in 10 women who suffers it, it means endometriosis research is chronically underfunded. And that compounds the cycle of inferior treatments and surgeries.

That’s the simple truth, in one hugely unpalatable nutshell.

A devastating impact

Sure, it rarely kills us, but here’s what it does do to sufferers.

It causes our reproductive organs, bowel and bladder to stick together. It means we suffer sciatica, heavy periods, pain during sex, difficulty going to the loo and disturbed sleep. In some cases, it causes pain in our diaphragms and creates holes in our lungs that bleed during our periods, which can cause our lungs to collapse. It can snatch away our ability to conceive.

It implodes our sex lives and relationships, destroys our careers and friendships. It fills our days with never-ending white-hot pain that drives us to opiate addiction. The relentless misery it metes out makes us three times more likely to be chronically anxious or depressed. Its merciless hold over our lives leads more than half of all sufferers to experience suicidal thoughts.

What endometriosis means to some of our readers:

But never mind, eh? It doesn’t kill us.

Meanwhile, when men can’t get their peckers to rise, they get a little blue pill and bingo. They’re sorted. Yes, I know Viagra’s woody-inducing magic was discovered by accident during a heart medication trial. But I’ll bet my one healthy ovary that millions of dollars were immediately thrown at scientists to run studies to determine that it was indeed the holy grail of boners.

Yet still women, or those assigned female at birth, bleed heavily for days on end, passing clots the size of teabags. They need catheters because their bladders no longer work. They have scorch marks on their tummies from constant heat-pad use to relieve the pain.

But, you know… Endometriosis doesn’t kill us. To add significant insult to significant injury, the condition also takes an average of 7.5 years to diagnose in the UK – a figure that has barely budged in decades and is replicated the world over.

It’s a truly abysmal state of affairs for the millions coping with this illness. Of course, not everyone who has endometriosis will suffer the worst symptoms – but many do, including me.

Turning point

A year ago, at the age of 32, I had my left ovary removed during my fifth endometriosis surgery in seven years. I also had excision surgery to cut out as much of the disease as possible after four ablations (laser removal of visible disease) failed to stop my pain.

The removal of my ovary was what I wanted, and thankfully my wonderful surgeon Mr CP Lim recognised that. He took on board that I already had a longed-for daughter (the result of a gruelling six-year journey through IVF), and that my husband and I had agreed another pregnancy wasn’t an option for me.

But finding a surgeon as empathetic as Mr Lim had been a struggle. I had encountered several surgeons before him who had insisted I should keep my ovary so I ‘could have another baby’.

Those earlier consultants had refused to acknowledge the fact my husband has insurmountable infertility due to severe mumps as a child – and that I’d never fall pregnant naturally. They’d also dismissed my argument that we had six embryos in storage too.

All they saw was a woman who was still of reproductive age. It was grossly patronising of them – and hugely infuriating to me – that they reduced everything I was, all that I knew and had endured, to me being a potential baby incubator.

I told them it was pointless of them trying to force me to keep my diseased ovary – I had no intention of ever having another baby whilst my ongoing pain limited how much I could physically care for the child I already had. But they wouldn’t listen.

However, the amazing Mr Lim (known as CP), a consultant gynaecological endoscopic surgeon, truly understood the impact endometriosis was having on my quality of life.

He took seriously the severity of my pain and how multiple ablation surgeries had failed to stop my ovary repeatedly becoming trapped and twisted in adhesions (fibrous scar tissue). He listened to the decisions my husband and I had reached about a second baby. He allowed me to advocate for myself in a way that really mattered.

Then he improved my quality of life by removing my bastard left ovary. After I came round from the surgery, CP told me: ‘I don’t know how you survived that pain.’ His vindication brought me to tears.

I never take for granted that I had the privilege of being able to afford private healthcare, and to pick and choose my surgeon. But many other sufferers aren’t so lucky. And that needs to change.

A benign menace

CP spoke to me about why there isn’t a cure for this awful disease – despite every sufferer desperately needing it.

‘We haven’t moved much further forward from where we were 30 years ago,’ CP begins. ‘Whilst some high-quality research on the condition is happening, there continues to be a lack of funding priority, meaning more cash is funnelled to life-threatening conditions. Because of endometriosis’s benign nature, it’s not perceived to be as important or debilitating as malignant diseases. Whilst the range of treatments has become more acceptable, they still carry a lot of undesirable side-effects.

‘Endometriosis can be more difficult and debilitating than cancer because of the burden of choice with regards to treatment. With many cancers, you either have treatment or you die. With this, you either have the treatment and suffer side-effects, or you don’t and suffer the problem of the disease.’

So what are the current choices? Medical management often involves hormone treatment, ranging from regular contraceptives (such as the Pill and the Mirena coil) to stop ovulation, to high-dose synthetic progesterone to stop periods altogether. Stronger treatments push sufferers into temporary menopause for months at time, in the hope the endometriosis becomes inactive and does not cause problems.

But most, if not all, of these carry undesirable side-effects such as weight gain, mood swings, hot flushes, acne and hair thinning. None of these treatments offers a long-term solution either.

They also switch off our fertility – if we have any left. Eventually sufferers may choose to have a full hysterectomy. And even then, that doesn’t necessarily mean the endometriosis pain will stop.

So why isn’t there a decent medication to help manage this chronic condition without all these hard-to-tolerate side-effects?

‘We don’t have enough information to understand why endometriosis starts in the first place,’ CP says. ‘Without knowing that, we can’t do things to find the cure, or prevent it from getting worse.’

And without funding for research, we will never figure that out.

Tricky to diagnose

Ultrasound scans, blood tests and internal investigations aren’t conclusive ways to diagnose endometriosis. The only definitive method is a laparoscopy (keyhole surgery under general anaesthetic) to view the inside of the pelvic area with a camera.

But a distinct lack of knowledge about endometriosis, even within the medical community, means many sufferers still being sent for ultrasounds (which can’t always detect endometriosis) then sent back to their GP with a ‘normal’ scan. And so begins the 7.5-year-long wild goose chase of missed diagnosis and misdiagnosis.

The standard surgical treatment is lasering away the disease – an ablation – but CP believes excision surgery, where the disease is cut out, is the far superior treatment.

‘From my experience, cutting it out will mean it’s less likely to form again compared to ablation surgery,’ he explains. ‘The down side is it’s technically more complex and difficult to perform, so it’s harder to find surgeons in the country who can do it. Fewer surgeons are trained in it because there is no evidence it makes a difference.

‘The reason there is no evidence is because we haven’t been able to develop research that is of adequate quality to prove there is a difference between the surgeries.’

It’s that vicious cycle again. Without more funding being allocated to research like this, women will continue to receive potentially inferior treatment that doesn’t resolve their endometriosis.

‘Whilst the research hasn’t proved it, common sense dictates that cutting out, rather than lasering away, endometriosis is more likely to prevent it returning,’ CP adds. ‘Certainly when I speak to other surgeons around the country, they feel the same.

‘Excision is more difficult but I always train my trainee surgeons to do it. With ablations, if you burn too deep, you risk damaging other structures in the body. But if you don’t burn deep enough, you risk not burning the disease and it could come back.’

• 62% of women between the age of 16 and 24 don’t know what endometriosis is

• 54% of people don’t know what endometriosis is, increasing to 74% of men

• 45% of women are unable to name any symptoms of the condition

Currently, 20 per cent of women with endometriosis who have surgery need further surgery for the disease within two years.

CP agrees that whilst majority of suffers are not disabled by endometriosis, there are some sufferers who may qualify as being disabled because of how badly it’s affecting them.

‘Helping improve these patients’ quality of life is really about our ability to diagnose the condition early,’ he says. ‘But we continue to lack in the infrastructure of our healthcare system to enable more practitioners to do this.’

what is ‘worse’?

CP adds that the symptoms of endometriosis can be the same as those for other problems so it’s hard to diagnose.

‘Another problem,’ he continues, ‘is that we are assuming that severe endometriosis is more debilitating than a mild disease. But my experience is women can have the slightest bit of endo – classed as stage 1 or minimal – and have worse pain than those with lots of the disease classed as stage 4, possibly because of the location of the disease.’

Whilst there has been work to reclassify the staging of the disease, medics around the world cannot agree on the parameters. And while we all wait for consensus to be reached, sufferers are forced to choose between heavy-going hormonal treatments, repeat surgery that may include a hysterectomy, or simply living with it.

Endometriosis costs the UK economy £8.2 billion each year
in treatment, healthcare costs and loss of work

Lifestyle and diet changes can help, but no matter how well you eat and exercise, you cannot magically get rid of the adhesions that have stuck your organs together.

Babies aren’t the answer

Many sufferers will also attest to being told by experts to ‘have a baby’ to alleviate symptoms, but it’s not that simple – or effective. Between 20 and 50 per cent of infertile women have endometriosis, so getting pregnant isn’t an easy option.

And even if we can get pregnant, why should having a baby be our only treatment solution? What about our lives, our careers? What if we actually want to enjoying living pain-free for a while before becoming a parent? And what if our pain doesn’t go away after the baby arrives, leaving us in agony and with a child to care for?

Women who have endometriosis often suffer pain during pregnancy too, and find their symptoms return with a vengeance postpartum.

Having a baby is not a cure and we are tired of being told this is one of our best options.

Hope for the future?

There is some progress though, with dedicated endometriosis centres in the UK delivering highly specialised care by experts in the disease. CP runs one such tertiary centre in Hertfordshire.

We’re also seeing changes in attitudes, with pressure groups and charities finally being heard in their calls for better research and more recognition of the devastating impact of the disease. As a result, in February 2020, MPs launched an inquiry to investigate the challenges faced by the 1.5 million endometriosis sufferers in the UK.

Medics making progress in endometriosis treatment

• Prof Andrew Horne and his team in Edinburgh are researching whether certain anti-cancer drugs are also suitable for treating endometriosis.
• Prof Abha Maheshwari and her team in Aberdeen are currently studying Surgery for Endometriosis (SEND) in the ovary prior to IVF.
• Dr Martin Hirsch in London has researched the quality of endometriosis guidelines and their need for standardisation in order to reduce variations in diagnosis and treatment.

I feel certain any advances in treatment will come too late to help me, but I truly hope the tide is turning. If in a decade’s time, God forbid, my daughter suffers any symptoms of endometriosis, I hope a simple blood test might give her a diagnosis. That instead of having to choose between several treatments with unreliable outcomes and unwanted side-effects, she’ll be presented with robust, effective and non-invasive medical management. And that she can live a happy, carefree life which isn’t ruled by this cruel and debilitating condition.

Endometriosis – it doesn’t kill us but it shouldn’t ruin our lives either.

*For information and support, visit Endometriosis UK

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