Endometriosis patients being failed and feel dismissed, new study shows

Women with endometriosis are being ‘medically gaslit’ as they feel dismissed and ignored when it comes to accessing healthcare support, a new study highlights. In the most comprehensive study of its kind, several barriers and challenges were identified when it came to accessing help and support – and how this made women with endometriosis feel.

This included a postcode lottery around the quality of care and a lack of medical understanding from healthcare providers when women communicated their symptoms.

The new psychological-based study from Manchester Metropolitan University showed this left women feeling dismissed, disempowered and demotivated, having further impact on their wellbeing and mental health.

Researchers have now outlined a series of recommendations for healthcare providers.

Senior Lecturer in Psychology Dr Jasmine Hearn said: “The experiences of the women we spoke to are sad, shocking and reveal issues of systemic sexism that still exists within the healthcare system.

“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.”

These challenges were reported despite them suffering ongoing pain, fatigue, low mood, and difficulty getting pregnant, among other symptoms of the condition.

A debilitating disease in which tissue similar to the lining of the womb grows around other organs and causes severe chronic pain, endometriosis affects 1.5m women in the UK.

For the study by Manchester Met due to be published later this month in the Journal of Health Communication, a group of 33 women either diagnosed or awaiting diagnosis were interviewed and surveyed, reporting multiple challenges and barriers to seeking help and support.

‘Medical gaslighting’ was an issue they viewed as being systemic within healthcare, leading to feelings of mistrust and dismissal.

As one participant, Alice, 27, commented: “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.

It affected the health and wellbeing of Lisa, 38, who 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.”

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, others reflecting on being unable to afford the private care they needed, and one citing her employers’ negative attitude to sick leave as a reason for her returning to work a week early after her operation.

There is currently no cure for endometriosis, and it can be difficult to diagnose and manage, with invasive keyhole surgery one course of action to try and destroy or remove excess tissue, and a hysterectomy (surgical removal of the womb) a more drastic option.

Based on the findings of their study, the authors have offered a series of recommendations to improve experiences of healthcare and reduce the diagnosis delay for women affected by endometriosis.

These include 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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The report, A COM-B and Theoretical Domains Framework Mapping of the Barriers and Facilitators to Effective Communication and Help-Seeking Among People with, or Seeking a Diagnosis of, Endometriosis is due to be published in the Journal of Health Communication later this month.