Endometriosis takes on average eight years to be diagnosed in the UK, a report has found.
The disorder affects one in 10 women of a reproductive age. It occurs when tissue similar to the lining of the womb grows in other parts of the body, usually the ovaries or fallopian tubes.
Each menstrual cycle, these cells break down and bleed, much like a period, except the blood has no way of leaving the body.
As well as reduced fertility, the main symptom is pain, which may be felt in the abdomen, during sex or when urinating.
The vague signs mean endometriosis is often misdiagnosed as irritable bowel syndrome, a urinary tract infection or just heavy periods.
Despite the condition’s wide prevalence, a report by the All-Party Political Group has revealed that endometriosis diagnosis rates have not improved in more than a decade.
More than 10,000 endometriosis patients took part in the inquiry, which was launched after BBC research found around half had experienced suicidal thoughts as a result of their pain.
The report’s authors found more than half (58%) of the women visited their GP more than 10 times before being diagnosed, while 53% went to A&E with symptoms, unaware they had endometriosis.
Most of the participants claimed their mental health, education or career had been damaged by the condition, with more than a third (35%) saying their income had been cut as a result.
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One woman who knows the impact of this all too well is Helen-Marie Brewster, 28, from Hull.
“I failed most of my GCSEs because I was in bed, in crippling pain,” she told the BBC.
“I've lost nearly every job I've ever had because of my poor attendance.
“Last year I visited A&E 17 times trying to find help and pain relief for this condition, even for just a few days so I can keep going.”
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Around nine in 10 (90%) of the inquiry’s participants would have liked access to psychological support, which they were never offered.
The report’s authors therefore recommend compulsory menstrual wellbeing should be taught in schools throughout the UK. It is only compulsory in English schools.
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With many of the participants claiming their medics seemed to be in the dark about endometriosis, the authors also want training for GPs, nurses and gynaecologists to be reviewed, as well as greater investment into diagnoses and treatments.
A woman with suspected endometriosis usually has her abdomen and vagina examined by a GP. She may then be referred for an ultrasound scan.
The only way to be sure of endometriosis is a test called a laparoscopy, which involves passing a thin tube through a small cut in the abdomen to look for patches of endometriosis tissue.
Endometriosis has no cure, with treatments aiming to relieve the pain, slow the growth of endometrial tissue and improve fertility, if necessary.
Hormone treatment can help limit or stop the production of oestrogen, which “encourages endometriosis tissue to grow and shed”. These therapies may include the pill, a “coil” or a contraceptive implant.
In more severe cases, keyhole surgery to cut out the endometrial tissue may be required. A hysterectomy may be a last resort.
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