Women with endometriosis are being ‘medically gaslit’, says study

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.