A woman diagnosed with stage four endometriosis said her cramps became so painful they felt like “contractions” – but a doctor said the pain was “normal”.
Mathilde Barker, 20, from York, North Yorkshire, said doctors ignored her cries for help for five years and called her names “dramatic”.
Endometriosis is an often painful condition in which tissue similar to the lining of the uterus – the endometrium – grows outside the uterus.
Mathilde, a musical theater student at Laine Theater Arts in Surrey, began suffering from back pain at the age of 15, just a few years after her period started. Her symptoms quickly intensified to include distressing menstrual cramps that felt like pregnancy “contractions.”
She went back and forth between specialists, desperate to find answers to her illness, but doctors remained stumped. Until April this year, when an operation revealed abnormalities at the back of her pelvis, leading to an immediate diagnosis of stage four endometriosis.
Mathilde Barker, 20, from North Yorkshire, was diagnosed with stage four endometriosis after experiencing painful cramps which felt like ‘contractions’. She is pictured here at the hospital
She suffers from endometriosis, an often painful condition in which tissue similar to the lining of the uterus – the endometrium – grows outside the uterus (Mathilde photographed before diagnosis)
Calling the diagnosis a “relief,” she explained: “They (the doctors) just thought I was being dramatic.
“They thought I was developing depression, but my cramps felt like contractions.
If labor is this painful, I don’t want to go through it. The diagnosis was a great relief. This can’t stop me now.
In addition to muscle aches and painful cramps, Mathilde also experienced loss of appetite, dizziness, dizziness and nausea.
She decided it was time to see a doctor after experiencing severe back pain following a dance performance.
She said: “After a dance performance I was in so much pain. I thought I had done my back.
“They told me it was a muscle strain and that I would be better in a few weeks.
“But it became a problem because I was now dancing full time.”
The student said doctors ignored her cries for help for five years and called her names “dramatic”. (She is pictured in hospital for surgery)
Mathilde is currently a musical theater student at Laine Theater Arts in Surrey, where she is currently pictured
Mathilde went back and forth between specialists, desperate to find answers to her illness, but doctors remained stumped (here she is pictured on vacation)
The pain persisting, Mathilde was invited to consult an osteopath who diagnosed her with a sprain of the sacroiliac joint.
The sacroiliac joints are the joints where the lower part of the spine (sacrum) connects to the pelvis. For this, she consulted a physiotherapist from time to time for two years, but her pain did not subside.
After another bout of intense pain, she ended up in the emergency room where she was once again told it was anything but her period and put on antidepressants.
She also tried birth control pills to ease the pain, but found her mental health had deteriorated and quickly grew out of it.
The back-and-forth continued for a staggering five years, with doctors telling Mathilde that pain was “normal” for a “woman,” and she was even sent to cognitive behavioral therapy for medical anxiety:
After much back and forth, her luck changed when she was subjected to a referral which led to an ultrasound and magnetic resonance imaging (MRI) scan (Mathilde pictured in hospital).
Throughout her ordeal, she remained positive, adding: “The diagnosis was a big relief. This can’t stop me now. Mathilde is pictured alongside her mother in hospital
She has now been given a Mirena IUD – a progestin hormone released into the uterus – to help relieve her symptoms and promote fertility. (She is pictured here having fun in class)
“I did three sessions of it and thought ‘this isn’t right,'” she said.
“I discovered that the pain started before my period arrived.
“They said it was a normal thing for women and prescribed me painkillers.
“I started to get quite frustrated. I endured the pain.
Her luck changed when she was then subjected to a referral which led to an ultrasound and magnetic resonance imaging (MRI).
Although tests revealed nothing, she was told to have surgery to see if she had endometriosis.
Six months later, in April 2023, Mathilde underwent a four-hour operation at Epsom General Hospital, Surrey, where doctors discovered endometriosis at the back of her pelvis.
Eventually, she was diagnosed with stage four endometriosis and offered a way to relieve the pain – through an IUD.
WHAT IS ENDOMETRIOSIS?
Endometriosis occurs when cells from the lining of the uterus are found elsewhere in the body.
Each month, these cells react in the same way as those in the uterus; accumulation, decomposition and bleeding. Yet blood has no way to escape the body.
Symptoms include pain, heavy periods and fatigue, as well as a higher risk of infertility and bowel and bladder problems.
Its cause is unknown but may be genetic, linked to immune system problems or exposure to chemicals.
Treatment focuses on relieving pain and improving quality of life, which may include surgery or hormone therapy.
Source: Endometriosis UK
She was fitted with a Mirena IUD – a progestin hormone released into the uterus – to help relieve her symptoms and promote fertility.
She remembers the moment she burst into tears upon receiving the news of the diagnosis. She explained: “They found stage four endometriosis – the most serious stage.
“It was all around the back of my pelvis. It was a great relief. It was a real pain.
“I burst into tears when they said they found it. That was the reason for all the pain.
Since the operation, Mathilde suffers less often but still experiences the same intensity of agony.
Offering advice to others, she added: “Be intentional.
“You feel what you feel.” Don’t let anyone tell you that pain doesn’t exist.