Endometriosis: Women in severe pain put off GP visits because of ‘medical gaslighting’ and thinking pain is normal

Women suffering from debilitating pain are putting off going to the doctor because they are worried their symptoms will be dismissed or think the pain is normal. 

Helen McLaughlin was told her symptoms were “just a UTI” – despite experiencing pain so bad she was in and out of hospital and struggling to walk, work, and put a seatbelt on.

She is one of about 1.5 million women and people assigned female at birth living with endometriosis in the UK.

Endometriosis is a condition where cells similar to the ones lining the womb grow outside the uterus.

They react to the menstrual cycle, building up and then breaking down and bleeding, but the blood has no way to escape.

Endometriosis can cause chronic pelvic pain, painful bowel movements, pain when urinating and having sex, fatigue and difficulty getting pregnant.

Despite the severity of the symptoms, 75% of women say they would not go to a doctor if they were suffering from them, a new survey by Endometriosis UK has found.

Among those who wouldn’t see a doctor, 24% said it was because they considered painful periods to be a normal part of life, while 23% said they would think it was “not serious enough to bother a doctor with”.

More than a fifth said they would worry doctors might not take their symptoms seriously.

Ms McLaughlin, 38, is a support group leader for Endometriosis UK and told Sky News many women with the condition are subject to “medical gaslighting”.

Asked what women get told when they present with symptoms, she rattles off a list: “It’s IBS, you’re overreacting, it’s all in your head, all women have heavy periods, ‘just get pregnant, it’ll cure you’.”

The last one is particularly insensitive, she said, because of the link between endometriosis and infertility.

It’s “really, really draining” advocating for yourself when doctors are dismissive, Ms McLaughlin said: “You’re already exhausted, in pain, confused, lost – you’re doubting yourself.”

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For her, the first inkling it was endometriosis didn’t come from a gynaecologist, but a stranger.

She was in hospital when she got a text from a friend asking if she’d heard of the condition: “There’s a woman at work that’s got it and she said you might have it too,” she said.

Ms McLaughlin recommends people who think they might have endometriosis keep a pain and symptom diary to show to a doctor and familiarise themselves with the NICE guidelines on endometriosis.

Despite the poor experiences some endometriosis sufferers have had or fear in the health system, she urged people not to delay seeing their doctor.

“If it’s impacting your normal day-to-day life and paracetamol or ibuprofen aren’t quite cutting it, then I would definitely go to the GP,” she said.

“You know your body better than anyone. So if your gut is telling you that something’s not quite right, then you should definitely push on.”