News
Women with endometriosis are being ‘medically gaslit’, says study
Research reveals women’s experiences of ‘medical gaslighting’ and its psychological impact
Women with endometriosis are being “medically gaslit” as they feel dismissed and ignored when accessing support, a new study has found.
The study, conducted by Manchester Metropolitan University, identified several barriers to care for women with endometriosis, including a postcode lottery around the quality of care and a lack of medical understanding from healthcare providers when women communicated their symptoms.
It showed the barriers, which were reported despite symptoms of ongoing pain, fatigue and low mood, left women feeling dismissed, disempowered and demotivated, having further impact on their wellbeing and mental health.
“The experiences of the women we spoke to are sad, shocking and reveal issues of systemic sexism that still exists within the healthcare system,” said senior lecturer in psychology, Dr Jasmine Hearn.
“What the participants told us 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.
“We hope that our study will help to change attitudes and systems so that every woman affected by endometriosis is believed, listened to and supported.”
‘I feel a lot of mistrust towards the healthcare system’
The study, published in the Journal of Health Communication, interviewed and surveyed a group of 33 women either diagnosed with endometriosis or awaiting diagnosis. The participants reported multiple challenges and barriers to seeking help and support.
According to the authors, “medical gaslighting” was an issue they viewed as being systemic within healthcare, leading to feelings of mistrust and dismissal.
One participant, Alice, 27, said: “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.”
Social stigma around discussing menstruation was also reported, with another participant, Emma, 21, saying: “I have no problem talking about menstruation and periods – but it is people’s and society’s reactions to the topic that makes me feel as though I cannot say anything. Almost as if it is a women’s issue that you must deal with quietly and alone.”
Participants reported that the healthcare providers lacked the appropriate medical understanding of endometriosis to provide effective support or referrals for further tests. This was cited as impacting relationships with healthcare practitioners, affecting confidence in seeking help and leading to negative emotions including fear, anger, frustration, depression and anxiety.
Lisa, 38, said: “I was put on several types of birth control to no benefit in pain reduction. We end up with other symptoms for taking these medications: addiction, stomach acid issues, stomach ulcers, constipation, unable to drive, unable to socialise or work, depression, weight gain, suicidal ideation, anxiety, unable to try for a baby. The list is endless, to be honest.”
According to the study, the women also discussed what they felt to be a postcode lottery when it comes to quality of care, with one participant reporting having to travel 52 miles to see her gynaecologist.
Endometriosis, a condition in which tissue similar to the lining of the womb grows outside the womb, affects one and a half million women in the UK.
However, there is currently no cure for it and it can be difficult to diagnose and manage, with invasive keyhole surgery one course of action and hysterectomy, a more drastic option.
Based on the findings of their study, the researchers from Manchester Metropolitan University have offered a series of recommendations to improve experiences of healthcare and reduce the diagnosis delay for women affected by endometriosis.
These included improving knowledge and awareness of endometriosis and other gynaecological conditions, more effective communication within healthcare systems, reducing stigma when discussing the condition and prioritising gynaecological health issues when considering waiting lists.
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Insight
Topical HRT protects bone density in women with period loss – study
Transdermal HRT best protects bone density in women with functional hypothalamic amenorrhoea, a condition that stops periods, a review of trials has found.
The meta-analysis pooled randomised clinical trials involving 692 participants and found transdermal hormone replacement therapy and teriparatide increased bone mineral density by between 2 and 13 per cent.
Functional hypothalamic amenorrhoea can follow anorexia or intense exercise. Bone mineral density measures bone strength and the amount of mineral in bone.
Around half of women with the condition have low bone mineral density, compared with about 1 per cent of healthy women, and their fracture risk is up to seven times higher.
The research was conducted by scientists at Imperial College London and Imperial College Healthcare NHS Trust.
Professor Alexander Comninos, senior author of the study and consultant endocrinologist at the trust, said: “Bone density is lost very rapidly in FHA and so addressing bone health early is very important to reduce the lifelong risk of fractures.
“Our study provides much needed comparisons of all the available treatments from all available studies.
“Clearly the best treatment is to restore normal menstrual cycles and therefore oestrogen levels through various psychological, nutritional or exercise interventions – but that is not always possible.
“The foundation for bone health is good calcium and vitamin D intake (through diet and/or supplements) but we have additional treatments that are more effective.”
When FHA is diagnosed, clinicians first try to restore periods through lifestyle measures, including psychological and dietary support, but these can fail. Guidelines then recommend giving oestrogen, though the best form was unclear.
The team reviewed all prior randomised trials comparing therapies, including oral and transdermal oestrogen, and also assessed teriparatide, a prescription bone-building drug used for severe osteoporosis.
They found no significant benefit for oral contraceptive pills or oral hormone therapy.
A recent UK audit reported that about a quarter of women with anorexia-related FHA are prescribed the oral contraceptive pill for bone loss; the study suggests using transdermal therapy instead.
Comninos said: “Our goal is simple: to help women receive the right treatment sooner and to protect their bone health in the long-term.
“We hope this study provides clinicians with better evidence to choose transdermal oestrogen when prescribing oestrogen and so inform future practice guidelines.
“Right now, millions of women with FHA may not be receiving the best treatments for their bone health.”
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