“My cramps were so painful it felt like contractions - I was dismissed for five years before my endometriosis 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 up anything, but she was told she could go for surgery to see if she had endometriosis. 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 diagnosis 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 labour 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.” 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 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 said: “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 also tried the contraceptive pill but found her mental health took a downward spiral and quickly came off it. When she went to the doctor again, she was sent for cognitive behaviour therapy for medical anxiety. She said: “I did three sessions of it and thought 'this isn’t right'.” 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 round 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.”