New research from Birmingham City University has highlighted the long delays women face in receiving a diagnosis and the ineffective treatment they're offered to manage the chronic illness.
Scientists assessed women's experiences with medical treatments for endometriosis symptoms and how that impacted on their willingness to fry further treatments.
Women aged between 19 to 36 were interviewed about how they got diagnosed and what help they had received, how the illness had affected their lives and their willingness to try a different treatment.
Each woman had tried at least one treatment for endometriosis in the past.
Women reported that the condition made day-to-day tasks "unbearable", and that it had contributed to the breakdown of relationships.
A number of them also said they had been dismissed, misdiagnosed or not taken seriously.
This new study also assessed how women’s experiences of treatments impacted upon their motivation to take part in a clinical trial to find an alternative treatment.
Experts found that many women had enrolled out of "desperation" and a willingness to "try anything" to manage the condition.
Co-lead author, Dr Annalise Weckesser explained: “It’s estimated that 10 per cent of women worldwide suffer from endometriosis, and it can take years from the onset of symptoms to receive a diagnosis.
Symptoms of endometriosis
Endometriosis is where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month, these cells react in the same way to those in the womb – building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
That can lead to infertility, fatigue, bowel and bladder problems, as well as really heavy, painful periods.
It affects one in ten women in the UK.
- Painful, heavy, or irregular periods
- Pain during or after sex
- Painful bowel movements
The cause of endometriosis is unknown and there is no definite cure.
According to Endometriosis UK, it takes over seven years on average for women to finally receive a diagnosis.
It's estimated that up to 50 per cent of infertile women has the condition.
Source: Endometriosis UK
“Many women suffering from the condition feel desperate to stop it from taking over their lives, but with no known cause and no definite cure, they end up trying a number of treatments often with little success.
“This study shows that previous experience of treatments, whether they have worked or not and whether they brought on unpleasant side effects, makes a big difference to how willing women are to try future treatments.
"This has important implications for clinical practice and how particular treatments are selected.”
Professor Elaine Denny, Professor of Health Sociology at Birmingham City University, added: “The fact that overall no one treatment was deemed more acceptable than the others shows the complex nature of the condition and highlights the need for more funding for women’s reproductive health and research.
"The more we can understand about how endometriosis is experienced, the better chance we have of helping the women who suffer from it.”
It takes an average of 7.5 years for women to receive a diagnosis – despite the National Institute of Health and Care Excellence (NICE) issuing GPs with new guidelines for speeding up diagnosis and treatment.
Earlier this month, we exclusively reported how one young woman had been "laughed at" and "ridiculed" by doctors who misdiagnosed her excruciating endometriosis.
With medics telling her that she was imaging her devasting symptoms, Suzan says that she felt like she was "going crazy" – eventually leading her to suffer from severe health anxiety and OCD which manifested itself as depression as she got older.
"Doctors say I'll probably need to have a full hysterectomy – I'm not even 30", she told The Sun.
Women are often misdiagnosed with IBS, cystitis, PCOS, fibromyalgia, appendicitis or food intolerances before they're eventually told about endometriosis.
Previous studies have found that women wait longer for treatment than men who have the same severity of belly pain, and are prescribed less pain-relieving medicine for it.
A 2006 study found that many women who are diagnosed with endometriosis often delay in seeking help because they've been conditioned to think that their excruciating period pain is just normal.
And other findings have suggested that endometriosis could be a factor in up to half of all women undergoing fertility treatment, as scarring can distort the reproductive organs.
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