Women who have symptoms of endometriosis feel ‘dismissed, disempowered and demotivated’ by their healthcare providers – putting a strain on their wellbeing and mental health, claims a new study.
Due to be published in full later this week, the study by Manchester Metropolitan University, also goes on to explain how women feel ‘medically gaslit’, and reaffirms why many women are exploring alternative health.
Endometriosis, an often debilitating disease, affects 1.5m women in the UK. The condition causes tissue, similar to the lining of the womb, to grow around other organs and causes severe chronic pain.
The small study looked at how 33 women, who have been diagnosed or are awaiting diagnosis for the disease, were treated by their healthcare providers. Some women admitted how their quality of care was a ‘postcode lottery’ – with one even travelling travel 52 miles to see her gynaecologist.
Many of the participants claimed that they were faced with a lack of medical understanding from doctors, with one woman admitting that her doctors took an unmethodical attitude to their diagnosis.
‘The gap in communication, lack of consistency throughout my consultations and general ‘trial and error’ approach to my treatment made me feel mistrusting of the diagnosis process and subsequent treatment,’ said Sophie, 30.
Other outcomes of the report found that employers had negative attitudes to sick leave, around their diagnosis and found that there was a unnecessary stigma around the condition. For many of them, this caused negative emotions including fear, anger, frustration, depression, and anxiety.
Alice, 27, who also took part in the study, explained that her pain was dismissed by doctors: ‘I feel a lot of mistrust towards the healthcare system in general, simply because I have been told that the pain was in my head, that I must have a low pain threshold or that I was in pain because I was fat.’
Senior lecturer in psychology Dr Jasmine Hearn, says the study reinforces that, ‘social norms surrounding the gendered experience of pain and the acceptability of discussing gynaecological health remain barriers to seeking help and support. The idea that women’s issues should be dealt with quietly, stoically, and alone is completely unacceptable.’
Based on the findings of their study, the authors have offered a series of recommendations to the NHS and other healthcare providers – including prioritising gynaecological health issues when it comes to waiting lists, improving knowledge and awareness of endometriosis and reducing stigma.
Charlotte McArdle, deputy chief nursing officer for patient safety and improvement at NHS England, told the Guardian: ‘The NHS takes endometriosis extremely seriously and it is essential that staff support women experiencing cyclical pain, as well as the [associated] psychological effects.
‘The health service is committed to meeting women’s individual healthcare needs and is rolling out dedicated pelvic health clinics – bringing together specialist healthcare staff – to provide further support for women living with endometriosis.’
The report is due to be published in the Journal of Health Communication this week.