‘I wasn’t listened to’: one woman’s agonising 17-year battle for endometriosis diagnosis

When Chetna Mistry was in her early 20s, she started suffering from extremely painful periods.

She visited her GP, who told her it was normal… that some women are just unlucky. But the pain - an excruciating agony that meant she couldn’t go out with friends, struggled to survive a day at work, and frequently ended up bed-bound - was far from normal.

“I just wanted to know what was happening to me,” Chetna, who lives in Rugby, Warwickshire, told NationalWorld. “Why am I in so much pain? Why is no one else experiencing this? Why is no one listening to me?”

Chetna returned to her GP multiple times - and the solution was to repeatedly trial her on different contraceptive pills and painkillers. Switching GPs, which she also did several times, didn’t help either. And no matter how many times she pleaded, each one refused to refer her to a specialist.

By the time Chetna reached her mid 30s, she was at breaking point: “I couldn’t take it anymore. You’re literally begging for help. I would have done anything to cure this unbearable pain.”

‘It’s a condition that destroys you’

It was then that Chetna tried a gynaecologist recommended by a friend - and a diagnosis started to seem possible. The doctor referred her for an MRI, which revealed cysts and a tumour on her womb. She underwent multiple surgeries over the coming years, including a hospitalisation.

“I felt like I was going to die,” she admitted, talking about her time in hospital. “I couldn’t move, I could barely talk. It was horrendous. I would pass out from the pain.”

In 2019, Chetna was finally, officially diagnosed with endometriosis - nearly two decades after she first sought help. But the battle did not end there. She found that hospital consultants did not properly explain the condition to her, nor point her in the direction of where she could get help. She also had no idea that it was incurable.

Now 43, Chetna is still awaiting more treatment - with her next surgery delayed as a result of the coronavirus pandemic backlog. She can no longer work in her job as a preschool leader, and has been housebound since January 2021, relying on family members to help her do even the simplest tasks.

She explained: “It affects everything. I have to change what I eat, what I drink, how I sleep. I use a wheelchair. I can’t maintain relationships with friends or work colleagues as I can’t see them. I am dependent on my family for everything - even going to the loo.”

Chetna said joining a support group run by Endometriosis UK has been a lifeline for her, helping her feel less isolated and more understood. “It’s been life-changing - meeting people who have experienced similar things to me,” she told NationalWorld. “I realised I should have been taken seriously all this time.”

But something that haunts Chetna to this day is the feeling of not being taken seriously or listened to, even when endometriosis was affecting every aspect of her life. She explained: “It’s a condition that destroys you - but it’s just not talked about enough. It shouldn’t be ignored any longer.”

She said that doctors and consultants need to be more aware of the signs and symptoms so hopefully no one ever has to go through the “agonising” battle she experienced - and is still struggling with.

But sadly, there are countless women who are still suffering. In fact, an APPG Inquiry on endometriosis found that the average diagnosis time is eight years - despite over 58% of respondents visiting their GP ten or more times with symptoms and 21% being seen in hospital ten or more times with symptoms.

‘Symptoms are not being recognised within the healthcare sphere’

Emma Cox, CEO of Endometriosis UK, said many of the problems are down to lack of research and investment into women’s health. She told NationalWorld: “There’s historically been very little research into women’s health, and particularly endometriosis. I would find it very difficult to believe if gender bias doesn’t play a part in it. Currently, we still don’t know what causes the condition, so we can’t find a cure for it. We need better research, better investment, and better testing for diagnosis.”

Approximately 10% of women suffer from endometriosis - a figure which some campaigners compare to the 10% of men and women who suffer from diabetes. In a UK Parliament debate on endometriosis funding in November 2021, Hannah Bardell, SMP for Livingston, said: “Searching ‘endometriosis’ in the UK Research and Innovation’s awards database produces 35 hits, meaning they have funded 35 endometriosis-related projects since 2003. If you search ‘diabetes’, a condition with the same incidence rate but one that affects both sexes, they have funded a total of 1,758 projects in the same time period.”

There are other gendered disparities too. Back in 2016, ResearchGate found that five times as much research is conducted into erectile dysfunction (which affects 19% of men) as premenstrual syndrome (which affects 90% of women).

Endometriosis UK argues that another factor that plays into lack of awareness and funding is a cultural tendency to minimise women’s symptoms. Ms Cox explained: “Women and girls are often told bad periods are just a fact of life. They - and society - are not taught the difference between what’s normal and what’s not, so girls and women are often told they’re overreacting. So when this type of response is compounded with symptoms not being recognised within the healthcare sphere and a lack of diagnosis from doctors, it can be really damaging and distressing.”

Ms Cox added that she hears stories everyday of young girls struggling to make friends as they have to cancel plans due to pain. She hears stories of women struggling at work because they have an important meeting or presentation while they’re on their period - but their bosses don’t understand how debilitating it will be.

Despite the issues, there are some changes being made. Endometriosis UK successfully campaigned to include education around menstrual health in school curriculums, something Ms Cox said it was a “step in the right direction” towards raising awareness for women’s health. Chetna added that she initially struggled to come forward about her pain because of the “taboo” around periods, and “societal and religious factors” that made her feel it wasn’t okay to talk about these things.

Another indicator of progress is that the Scottish Government has explicitly included the aim of reducing the endometriosis diagnosis time in its health plan - sparking hope for many that the UK Government will follow in its footsteps.

But for women like Chetna, who describes endometriosis as a condition that “breaks you as a person”, change is not happening quick enough. She said: “Those who suffer from endometriosis still have to fight for our voices to be heard. I can only hope more women are listened to soon.”