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'During every GP visit I feel I have to justify my pain'

The Independent

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May 31, 2025

It took 14 years for Zainab Kaleemullah to be diagnosed with endometriosis - and a new report shows she is far from alone

- REBECCA THOMAS

'During every GP visit I feel I have to justify my pain'

Zainab Kaleemullah lives with debilitating pain almost daily, and despite a 14-year battle to finally get a diagnosis, she says she still has to justify her pain to get the treatment she needs.

The 36-year-old has severe endometriosis and adenomyosis painful conditions where tissue grows outside of the uterus or into its muscular wall - and spent more than a decade making repeated trips to doctors to get to the cause. She says she was misdiagnosed with conditions such as irritable bowel syndrome and depression, and even after being diagnosed, she faced a further two-year wait for surgery to remove the harmful tissue.

She tells The Independent: "I get pain almost every day now.

Sometimes I've felt that my condition isn't taken seriously, or [doctors] think that I perhaps over-exaggerated my pain, or they think it's probably something else. This condition was causing me such debilitating pain, and I almost feel like I have to justify it every single time I talk about it." Kaleemullah is one of the 25 million people in England struggling with long-term health conditions, including endometriosis, cystic fibrosis, epilepsy and diabetes.

Research shared exclusively with The Independent estimates that around 7.5 million of these people are not getting the support they need from NHS services - a 10 per cent increase in the last five years, according to a study by charity National Voices and think tank Future Health.

Patients with long-term conditions account for 70 per cent of GP appointments and 50 per cent of hospital appointments and treatment. Despite this, 11.5 million do not have an NHS plan to help them manage their illness, which could provide for timely access to specialists or correct pain management.

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