"I was dismissed for five years before my endometriosis diagnosis”
- 8 months ago
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.”
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.”