- This disease causes tissue similar to the womb’s lining to grow in other places – such as the ovaries and fallopian tubes.
- Yet despite how common endometriosis is, people who have the disease still wait around eight years on average to be diagnosed.
- Our research identified the four main challenges people faced in accessing endometriosis care:
1. Systemic sexism
- Our participants described a health system tarred by systemic sexism.
- Experiences were characterised by doctors and nurses not believing them or thinking they were exaggerating.
- Almost as if it is a women’s issue that you must deal with quietly and alone.
2. Long waiting lists
- Long waiting lists prevented participants from seeking help.
- And, many felt resigned to pay for private healthcare if they could afford it.
- Others chose private care because they felt waiting any longer for NHS care would have had a serious impact on their mental health.
3. Lack of treatment options
- Participants overwhelmingly reported they felt helpless about their treatment options – even after being diagnosed.
- As one interviewee put it:
I feel helpless when I try to manage my pain.
- I feel overwhelmed and I can sit there for a while and just not know what to do.
Another participant stated that the “general ‘trial and error’ approach to my treatment made me feel mistrusting of the diagnosis process and subsequent treatment”.
4. Self doubt and fatigue
- They worried that even if they tried getting help, they wouldn’t receive the support they wanted anyway.
- Women reported intense and overwhelming fear and helplessness, feeling drained from being forced to advocate for themselves.
Need for change
- Our findings suggest that we need cultural change.
- We need to de-stigmatise gynaecological health and change attitudes towards pain so that it’s no longer dismissed or normalised.
- We also need better awareness of endometriosis and training for doctors and nurses so that diagnoses and treatment happen more quickly.
The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.