Woman with endometriosis forced to pay £25,000 for private care after condition ‘missed’ for 8 years

Aneka Hindocha says women’s pain often gets overlooked and ignored - it took nearly a decade for her stage 4 endometriosis diagnosis

A woman says she was forced to pay around £25,000 for private healthcare to treat endometriosis after her symptoms were “overlooked” for eight years.

Aneka Hindocha, 34, started voicing her concerns about painful periods when she was aged 25 but says she was initially told by doctors this was normal.

Ms Hindocha, who described the pain of endometriosis as “someone ripping your insides out”, says the condition should have been diagnosed sooner but argued women’s pain often gets overlooked and ignored.

Endometriosis is a very common chronic inflammatory condition, impacting an estimated 1.5 million women in the UK. An inquiry by the All-Party Political Group found that like Ms Hindocha, it takes an average of eight years to get a diagnosis.

Have you been affected by this story? If so email maya.oppenheim@independent.co.uk

The condition sees tissue comparable to womb-lining grow in other places in the body - with symptoms often debilitating and spanning from infertility to painful periods, tiredness, pain while having sex, as well as depression and anxiety.

“I was told painful periods were normal, which they are not, but I believed that at the time,” Ms Hindocha told The Independent. “I thought the issue was me. I thought I was being a hypochondriac.”

Ms Hindocha, who lives in north London, explained she was placed on an NHS waiting list for suspected endometriosis at the beginning of 2020 - adding she was awaiting a laparoscopy, a form of keyhole surgery to check if you have the condition, but was never given one.

Ms Hindocha on a trek to raise money for Endometriosis UK (@anekah)

Her health massively deteriorated in the summer of 2020 and she became bedbound for three days.

“I needed someone to find out what was wrong with me,“ Ms Hindocha added. “I was crying I was in so much pain.”

She says that two years later she still had not received her laparoscopy despite the fact her pain was getting more severe, she added.

Ms Hindocha, currently halfway through a 500-mile trek along the well-known Camino de Santiago Trail in Spain to raise money for Endometriosis UK, said: “I couldn’t handle being in that much pain and continuing to wait.

“So at the end of 2021, knowing something wasn’t right with my body, I ended up paying for a private scan and then finally got diagnosed with stage 4 endometriosis a week later.

“By the time of having my surgery at the end of February 2022, it had been nearly two years on the NHS waiting list and I was still being told to wait.”

The campaigner said the condition would not have reached stage 4 if it had been identified sooner.

Endometriosis is a common condition that can cause cysts (Getty)

“Essentially the growth had got so bad that my endometriosis had covered my bowel, bladder, ovaries and lower back, as well as other places,” Ms Hindocha said.

Her cell growth meant she was forced to go on chemotherapy drugs, which induced early menopause, she said.

Ms Hindocha said she had to have complex surgery which required a bowel surgeon and a specialist gynaecologist to be free on the same day.

Despite paying around £25,000 for surgery, Ms Hindocha said her blood tests are still abnormal and she suffers from hot flushes every night, which means she struggles to sleep.

“They remove as many cells as they can during the surgery, but ultimately it is normally two years until the endometriosis comes back,” she said. “Many women with endometriosis have surgery multiple times. There is no cure for endometriosis. It can never go away.”

Ms Hindocha, who has set up a campaign to raise awareness of endometriosis called #LetsEndoTheSilence, said she had spoken to around 200 people about endometriosis while on her trek in Spain.

“These are people from all over the world,” she said. “Most people have heard about endometriosis but they don’t know exactly what it is.

“There is a lack of education around taboo subjects like the menopause, endometriosis, and painful periods. This isn’t the fault of hard-working, dedicated but overstretched NHS workers but a systemic, structural issue.”