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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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You have until Friday to nominate your femtech company of the year.
The award is one of 10 featuring at Femtech World’s third annual awards event, which attracts entries from across the UK, EU and Europe.
The Company of the Year Award is for companies that have demonstrated exceptional leadership in tackling women’s health needs through groundbreaking products, services or platforms that are shaping the future of global femtech.
If your company is driving innovation, impact and growth in this space, this award was made for you.
About the sponsor: Femovate
The category is backed by Femovate, the global femtech incubator using design to fuel innovation across every stage of a woman’s health journey, from proactive prevention through to personalised treatment.
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Why enter?
The Femtech World Awards are free to enter.
Winners and shortlisted companies receive extensive coverage across all Femtech World platforms.
Winners will also receive a trophy and the opportunity to be featured in an interview for the publication.
Find out more about the Femtech World Award and enter here by 4pm BST on Friday 17.
Women with osteoporosis may be more likely to carry a gene linked to Alzheimer’s, according to new research.
Scientists found that APOE4, the most common genetic risk factor for Alzheimer’s, can weaken bone quality in women, even when standard scans appear normal.
The study, carried out by researchers at the Buck Institute for Research on Ageing in California, US, and UC San Francisco, suggests the gene may damage bone at a microscopic level long before any visible signs.
These changes can emerge as early as midlife and remain invisible to routine imaging tests used to assess bone strength.
The findings suggest a link between Alzheimer’s risk and skeletal health and could help pave the way for earlier detection of both conditions.
Professor Birgit Schilling, a senior author of the study, said: “What makes this finding so striking is that bone quality is being compromised at a molecular level that a standard bone scan simply will not catch.
“APOE4 is quietly disrupting the very cells responsible for keeping bone strong – and it is doing this specifically in females, which mirrors what we see with Alzheimer’s disease risk.”
Doctors have long observed that people with Alzheimer’s suffer higher rates of bone fractures, while osteoporosis in women is known to be one of the earliest predictors of the disease.
Now scientists believe they may have uncovered why.
Researchers led by Dr Charles Schurman carried out a detailed analysis of proteins in aged mouse bone and found that tissue was unusually rich in molecules linked to neurological disease, including those associated with Alzheimer’s.
In particular, long-lived bone cells known as osteocytes showed elevated levels of APOE, with levels twice as high in older female mice compared with younger or male animals.
Further experiments using genetically modified mice revealed that APOE4 had a strong and sex-specific impact on both bone and brain tissue.
The disruption at the protein level was even greater in bone than in the brain.
However, the bone structure itself appeared completely normal under scans.
Instead, the gene interfered with a key maintenance process inside bone cells, preventing them from repairing microscopic channels that keep bones strong and resilient.
When this process breaks down, bones become more fragile even if they look healthy on standard imaging.
These results suggest bone cells could potentially act as early biological warning signs of cognitive decline in women carrying APOE4.
Professor Lisa Ellerby, another senior author, said: “We think targeting these cells may open a new front in preserving bone quality in this population.”
Experts say the findings highlight the need to view the body as an interconnected system rather than treating diseases in isolation.
Dementia, of which Alzheimer’s is the most common form, remains one of the UK’s biggest health challenges.
Around 900,000 people are currently living with the condition, a figure expected to rise to 1.6 million by 2040.
It is already the leading cause of death, responsible for more than 74,000 deaths each year.
Health secretary Wes Streeting has relaunched England’s women’s health strategy, vowing to stop women being “gaslit” by doctors.
Speaking before publication of the renewed strategy, the health secretary said the NHS was “failing women” and set out measures to help them access the healthcare they need.
The government said the strategy would include a new standard of care to ensure women were offered pain relief for invasive procedures, such as fitting a contraceptive coil and hysteroscopies.
Feedback would be directly linked to provider funding through a new trial, giving women more power to affect change if they have a poor experience.
Action would also be taken to ensure women no longer face long waits for diagnoses for conditions such as endometriosis, which can take a decade to diagnose.
Streeting said: “[Women] have for so long been let down by a healthcare system that too often gaslights women, treating their pain as an inconvenience and their symptoms as an overreaction.
“Whether it’s being passed from one appointment to another for conditions like endometriosis and fibroids, or a lack of proper pain relief during invasive procedures, through to having to navigate symptoms for years before receiving a diagnosis, it’s clear the system is failing women.
“Women’s voices must be central to delivering effective, respectful and empathetic care. We need to hit medical misogyny where it hurts – the wallet.
“Today’s renewed strategy will tackle the issues women face every day and ensure no woman is left fighting to be heard.”
A report last month by the women and equalities committee found that gynaecological and menstrual health had not been “sufficiently prioritised” by the government.
MPs said parts of the 10-year women’s health strategy, launched in 2022 by the Conservatives, were at risk of being scaled back or discontinued under wider changes to the NHS.
These included initiatives that had reduced waiting lists and improved women’s access to healthcare, such as women’s health hubs.
Sarah Owen, chair of the committee and a Labour MP, said: “This would be a disaster for girls’ and women’s menstrual healthcare, when it is in dire need of more support.
“It is a national scandal that nearly half a million women are on hospital gynaecology waiting lists when there are effective treatments that could be administered in primary and community care, if only they could access them.”
The report said women faced “medical misogyny” and were left to “suck it up” and suffer in pain for years because of a lack of awareness of women’s health conditions.
A redesign of clinical pathways for some women’s health issues will aim to speed up diagnosis and treatment, and there will be a review of support for families who experience repeated baby loss.
The government also promised a “single referral point” to ensure women were directed to the right place the first time they sought help.
Dr Sue Mann, NHS England’s women’s health director, said too many women were dismissed for “serious symptoms” that affected every part of their lives.
“The renewed women’s health strategy will build significantly on the work the NHS has been doing to ensure women are heard and get the specialist care they need,” she said.
Women’s health groups cautiously welcomed the renewed strategy. Emma Cox, chief executive of Endometriosis UK, said decisive action would be vital to improve women’s healthcare in England.
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