When she was 19, Brittnee started to experience painful sex. “That’s when my endometriosis started impacting my daily life and relationships, though I had dealt with crippling period pain many years prior,” she explains. Sex pain is a common symptom of endometriosis but, sadly, people report that they often feel dismissed when they bring it up with their GP. “The pain,” Brittnee continues, “was destroying my life. It was searing and resulted in bleeding and vomiting any time I was intimate [with a sexual partner]. When this started happening, it triggered repressed memories of sexual assault, just adding to the pain, shame and embarrassment of the situation. The complication I faced then was having this pain disregarded by doctors, who then seemed to use this traumatic experience as a reason for why I was experiencing pain, rather than look into the cause of the pain itself.”
Now 27 years old, Brittnee has shared her experiences with the All Party Parliamentary Group (APPG) on Endometriosis. Today, they’ve released an inquiry in which they’ve surveyed over 10,000 people with endometriosis. The findings are stark. Until recently, the average diagnosis time for the condition was seven and a half years. This report puts it at eight years on average, meaning that not only has there been no improvement in over a decade but that the situation has slightly worsened.
And so, like Brittnee, a huge proportion of the 1.5 million people who suffer with endometriosis in the UK spend the best part of a decade waiting for confirmation of their condition and appropriate treatment. The report also found that prior to getting a diagnosis, while presenting with symptoms, 58% of respondents visited their GP more than 10 times, 43% visited doctors in hospital over five times and 53% visited A&E.
Once diagnosed, only 16% of respondents were sure that they had been seen in an endometriosis specialist centre and 90% said they would have liked access to psychological support but were not offered it. Confirming that Brittnee’s experience is, regrettably, far from unique, 46% said that their GP(s) had been “unhelpful” or “very unhelpful”.
Brittnee says that the “fight for a diagnosis and treatment” takes a toll in its own right. “Finally having my pain and experience acknowledged in therapy has given me the tools to live a happy and healthy life as a woman in my 20s – it really is that simple,” she explains. “It should be standard practice that mental health services are available, and encouraged, for anyone undergoing diagnostic testing and treatment for endometriosis. Additionally, experiences of past trauma and mental health should absolutely not be exploited as a barrier to fair healthcare, as they have been for me.”
The issues uncovered by the APPG did not stop at the wait for a diagnosis. They also found that the wait for treatment was unacceptable. Before the coronavirus crisis, 30% of people who responded to the survey said that they waited six months or more from when their gynaecologist said they needed surgery until the surgery itself. On top of that, 54% said that they were “not very” or “not at all” confident that they could get an appointment with a gynaecologist about their endometriosis symptoms if they felt they needed to. And 72% reported that they were not given any written information when diagnosed, leaving them without the knowledge and advice they need to make informed choices about their healthcare.
Years of battling for a diagnosis and being told their pain is in their head can take a huge mental toll, as well as impacting on people’s education, relationships and careers.
Faye Farthing, Endometriosis UK
Endometriosis is a serious condition which can be “as severe as cancer” in terms of how it affects a patient’s life. The APPG’s report shows that it is not being taken seriously enough and paints a dismal but clear picture: people who suffer with endometriosis are currently being failed by our healthcare system. However, they note that there are things we can do to improve the situation. They are calling on all governments in the UK to commit to a series of measures, including:
– A commitment to reduce average diagnosis times with a target of four years or less by 2025, and a year or less by 2030.
– Ensuring a baseline for endometriosis diagnosis, treatment and management by implementing the National Institute for Health and Care Excellence (NICE) guidelines on endometriosis treatment and management (2017) across the UK.
– An investigation into the barriers faced in accessing care for those from Black, Asian and minoritised ethnic backgrounds and end the ethnicity and gender gaps in medical research.
– Investment in research to find the cause of endometriosis, better treatment, management and diagnosis options, and one day a cure.
– A commitment from all four nations in the UK to include compulsory menstrual wellbeing in the school curriculum so that young people recognise the warning signs of menstrual health conditions and know when to seek help. This is compulsory in schools in England from 2020, but is not UK wide.
We know that there is a gender health gap in this country. A lack of research into conditions that affect women and people with wombs is leaving them without the care and treatment that they urgently need.
Speaking to Refinery29 UK, Faye Farthing, campaigns and communications manager at Endometriosis UK, said: “Prompt diagnosis would also potentially have a positive impact on mental health outcomes for those with endometriosis – years of battling for a diagnosis and being told their pain is in their head can take a huge mental toll, as well as impacting on people’s education, relationships and careers. The links between physical and mental health must be recognised, and support must be provided. It still takes an average of eight years to diagnose endometriosis – this isn’t good enough and must change.”
She added that “getting access to the right treatments and support, at the right time and in the right place with access to skilled and experienced healthcare practitioners, gives the best chance for endometriosis to be managed effectively.”
Faye also noted that an intersectional approach is crucial to rectifying the current flaws in the system and closing the gaps through which too many people are falling. “We also know that there are many additional barriers in getting a diagnosis and accessing support for those from Black, Asian and minority ethnic backgrounds, and those who identify as LGBTQ+,” she explained. “As a priority, the government must commit to working with the NHS to ensure nobody faces additional barriers in accessing healthcare due to their race, gender, sexuality, age, ability or social status.”
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