My cramps were incredibly painful – it took five years to get awful diagnosis

A woman with stage four endometriosis says her painful cramps feel like “contractions” – and claims she was dismissed for five years for being “dramatic”.

Mathilde Barker, 20, first experienced back pains while dancing aged 15, a few years after starting her period. At first, she says she was told the pain was a muscle strain but after undergoing physiotherapy over the years there was no improvement.

As well as severe muscle pain, she experienced cramps which felt like contractions, a loss of appetite, light-headedness, dizziness and nausea around her time of month.

For five years, Mathilde went back and forth to doctors but claims she was told her pain was “normal” for a woman and even sent for cognitive behaviour therapy for medical anxiety.

Mathilde finally went for a referral and had an ultrasound and MRI which didn’t show anything, but she was told she could go for surgery to see if she had endometriosis.

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Endometriosis is a condition where the tissue of the lining of the womb grows in other places.

Mathilde underwent a four-hour operation at Epsom General Hospital, Surrey and doctors found stage four endometriosis – discovering pockets of it in the back of her pelvis in April 2023.

She was “relieved” to be diagnosed and has now been fitted with a Mirena coil – a progestogen hormone released into the womb – to help ease her symptoms and help with fertility.

Mathilde, a musical theatre student at Laine Theatre Arts, from York, North Yorkshire, said: “My cramps were like contractions. If labor is that painful, I don’t want to go through it. The diagnosis was a big relief. It can’t stop me now.”

Mathilde first went to the doctor after experiencing back pain following a dance show. She said: “After a dance show I was in so much pain. I thought I’d done my back in. They told me it was a muscle strain and I’d get better in a few weeks.”

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Mathilde’s pain didn’t subside, and she went to see an osteopath who said she had a sprained sacroiliac joint. She saw a physio on and off for two years, but her pain still didn’t subside.

She said: “It became an issue as I was now dancing full-time.” When Mathilde started college aged 18, she saw a different osteopath who suggested the pain may be related to her period.

She said: “I found out the pain was starting before my period came.” She was referred to a gynaecologist but told it likely wasn’t related to her period.

Mathilde added: “They said it was a normal thing for women and prescribed me painkillers. I started to get quite frustrated. I put up with the pain.”

After a trip to A&E, she claims she was told again it wasn’t her period and put on anti-depressants instead.

Mathilde said: “They just thought I was being dramatic. They thought it was depression I was developing.”

Mathilde finally got a referral and was told she could have surgery to look for endometriosis. She waited six months and went for the surgery in April 2023. She said: “They found stage four endometriosis – the most severe stage. It was all around the back of my pelvis.

“It was a big relief. It was genuine pain. I burst into tears when they said they found it. It was a reason for all the pain.”

Since the surgery, Mathilde has been in pain less often but still experiences the same intensity of agony. Endometriosis is a lifelong condition and Mathilde will have to continue having surgery to treat it.

She said: “Be strong-willed with it. You’re the one who feels what you’re feeling. Don’t let anyone tell you that pain isn’t there.”

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