Leeds University Union PhD student Ellen Frost shares her insights on endometriosis and the barriers to getting a diagnosis, in her own words:
My name is Ellen, I’m a PhD student in the School of Psychology, and my project aims to explore the barriers to getting an endometriosis diagnosis.
On average it takes nine years and four months to get an endometriosis diagnosis (Endometriosis UK, 2026).
Endometriosis is a full body condition in which tissue, similar to the lining of the womb, can grow in other parts of the body. This can break down and bleed causing chronic inflammation and pain.
Endometriosis can be found in one in 10 women* (*endometriosis can be experienced by cisgender, transgender, gender-diverse, agender, and intersex people). But despite it being a very common condition, this diagnostic delay persists.
Stigma could be a factor that prevents people from receiving a timely diagnosis. Historically women presenting with pain (often related to menstruation) have been perceived as ‘hysterical’.
These days this is mirrored by people with pelvic pain being told that their pain is ‘all in their head’ or ‘psychosomatic’.
Due to this, people who have taken part in my PhD studies describe a stigma around sex and periods. They feel like they cannot talk about their symptoms due to shame and because no one else seems to talk about it.
People are worried that they will be seen as exaggerating their symptoms, which are often normalised by healthcare professionals, friends and family, and colleagues. Clearly these deep-rooted ideas of women and their pain prevail into today’s society.
Such experiences of endometriosis are relevant at university as this along with other similar conditions, such as PMOS and adenomyosis, has an impact on accessing work and school.
Participants from my studies have stated that they’re worried about the financial cost of treating endometriosis or the impact on earnings due to sick days off work.
In some instances, people are unable to access healthcare due to not being able to get time off work and school.
At best people feel guilty for taking time off work, at worst people have had to quit their jobs or their studies due to the intensity of their symptoms.
Stigma, menstrual etiquette, medical gaslighting and normalisation of symptoms are just a few barriers to getting a diagnosis. It is arguable that these barriers have their origins in social structures.
For example, patriarchy and pronatalism (the idea that women should have children) can prevent some people from having access to the healthcare that they desire.
Other barriers can be organisational in nature and include, waiting lists, limited treatment options, and a lack of endometriosis knowledge.
Regardless of the cause of the delay in diagnosis, people should not be at a disadvantage in their place of work or school due to their health conditions.
Although there is a lack of research into these areas, visibility helps to incite change.
The more work that is done, the more we can demonstrate that extra challenges exist for this patient group and the more we can argue for change and support.
Leeds Ball: Your Questions Answered
